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This is part one of the paper, part two is a form patients can print out and
fill in (or tick the appropriate boxes on) that goes into detail about their
symptoms of M.E. and their specific disabilities. I haven't included it here
because the formatting would be all over the place due to the plain text
format. An ability/disability scale is also included.
Here is part one:
--------
Hospital and carer notes for Myalgic Encephalomyelitis
Copyright © by Jodi Bassett, April 2008
Available: http://www.ahummingbirdsguide.com/hospitalandcarernotes.htm
Patients with Myalgic Encephalomyelitis have a variety of specific care
needs, some of which are well-known and common to a variety of other
illnesses and others which are unique to M.E. and with which hospital staff
or carers may be wholly unfamiliar.
Inappropriate care (even if well intentioned) can have serious consequences
for M.E. patients in the short term and the long term, or even permanently.
Knowledge of some of the basics about how M.E. affects the body is vital if
you are in the position of providing care for someone with M.E. in order to
avoid additional unnecessary suffering and disability. This paper provides a
brief overview of this topic for hospital staff and carers.
What is Myalgic Encephalomyelitis? How does it affect the body?
Myalgic Encephalomyelitis is a debilitating neurological (CNS) disease which
has been recognised by the World Health Organisation since 1969 as a
distinct organic neurological disorder with the code G.93.3. It can occur in
both epidemic and sporadic forms and over 60 outbreaks of M.E. have been
recorded worldwide since 1934.
M.E. is an acute onset neurological disease initiated by a virus (an
enterovirus) with multi system involvement which is characterised by post
encephalitic damage to the brain stem (hence the name 'Myalgic
Encephalomyelitis'). M.E. is similar in a number of significant ways to
diseases such as multiple sclerosis, Lupus and Polio. At least 25% of M.E.
sufferers are severely affected and are almost completely (or completely)
housebound and/or bedbound. Children as young as five can get M.E., as well
as adults of all ages. M.E. has a similar strike-rate to multiple sclerosis
and is a (potentially fatal) chronic/lifelong illness.
M.E. is primarily neurological, but because the brain controls all vital
bodily functions virtually every bodily system can be affected by M.E.
Although M.E. is primarily neurological it is also known that the vascular
and cardiac dysfunctions seen in M.E. are also the cause of many of the
symptoms and much of the disability associated with M.E. - and that the
well-documented mitochondrial abnormalities present in M.E. significantly
contribute to both of these pathologies. There is also multi-system
involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine
organs in M.E. Some individuals also have damage to skeletal and heart
muscle.
Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all
bodily systems including: cognitive, cardiac, cardiovascular, immunological,
endocrinological, respiratory, hormonal, gastrointestinal and
musculo-skeletal dysfunctions and damage. Myalgic Encephalomyelitis affects
the brain, the heart, almost every bodily system and every cell of the body.
One of the defining features of M.E. is an inability to maintain
homeostasis.
What all of this means in practice is that patients with M.E. have to be
very careful with or limit:
a.. Physical activity
b.. Cognitive activity
c.. Sensory input (exposure to light, noise, movement and vibration), and
d.. Orthostatic stress (maintaining an upright posture)
The main characteristics of the pattern of symptom exacerbations, relapses
and disease progression (and so on) in M.E. include:
1.. People with M.E. are unable to maintain their pre-illness activity
levels. This is an acute (sudden) change. M.E. patients can only achieve
50%, or less, of their pre-illness activity levels post-M.E.
2.. People with M.E. are limited in how physically active they can be but
they are also limited in similar way with; cognitive exertion, sensory input
and orthostatic stress.
3.. When a person with M.E. is active beyond their individual (physical,
cognitive, sensory or orthostatic) limits this causes a worsening of various
neurological, cognitive, cardiac, cardiovascular, immunological,
endocrinological, respiratory, hormonal, muscular, gastrointestinal and
other symptoms.
4.. The level of physical activity, cognitive exertion, sensory input or
orthostatic stress needed to cause a significant or severe worsening of
symptoms varies from patient to patient, but is often trivial compared to a
patient's pre-illness tolerances and abilities.
5.. The severity of M.E. waxes and wanes throughout the hour/day/week and
month.
6.. The worsening of the illness caused by overexertion often does not
peak until 24 - 48 hours (or more) later.
7.. The effects of overexertion can accumulate over longer periods of time
and lead to disease progression, or death.
8.. The activity limits of M.E. are not short term, a gradual (or sudden)
increase in activity levels beyond a patient's individual limits can only
cause relapse, disease progression or death in patients with M.E.
9.. The symptoms of M.E. do not resolve with rest. The symptoms and
disability of M.E. are not just caused by overexertion, there is also a base
level of illness which can be quite severe even at rest.
10.. Repeated overexertion can harm your chances for future improvement in
M.E. M.E. patients who are able to avoid overexertion have repeatedly been
shown to have the most positive long-term prognosis.
11.. Not every M.E. sufferer has 'safe' activity limits within which they
will not exacerbate their illness, this is not the case for the very
severely affected.
In short, if patients with M.E. exceed their individual post-illness
physical, cognitive, orthostatic and other limits, they will experience some
combination of the following:
a.. A mild-severe (acute or delayed) worsening of one or more symptoms for
hours, days or longer afterward
b.. A mild-severe (acute or delayed) worsening of virtually every symptom
for hours, days or longer afterward
c.. A severe (acute or delayed) worsening of the base level of
illness/disability for hours/ weeks/ months or even years afterward, or
d.. A permanent worsening of the base level of illness/disability (i.e.
permanent physical damage is caused and chances for significant recovery are
adversely affected or taken entirely)
It is also important to be aware that repeated or severe overexertion can
also result in the death of the M.E. patient. (Death in M.E. is most often
caused by heart failure or multiple organ failure.)
So what are the top 10 most obvious things you need to be aware of in
providing care to a M.E. patient?
a.. Reduce exposure to light
b.. Reduce exposure to noise
c.. Reduce/eliminate all non-essential visitors
d.. Do not encourage patients to be more physically active (or upright
longer) than they can easily tolerate
e.. Try to schedule demanding tasks for the patient's best time of day as
much as is possible
f.. Try to reduce the patient's levels of cognitive exertion and sensory
input
g.. Be aware of any special dietary requirements
h.. Be aware of the likelihood of negative drug reactions
i.. Be aware of the need for extensive rest and problems with sleep
j.. Be aware that these aforementioned relapses can be delayed, and that
they can be very serious and prolonged
1. Reduce exposure to light
-Some patients will require the room to be completely dark (or very close to
it), some will be fine so long as blinds and doors are kept closed, while
other patients will fit somewhere in-between these two extremes.
2. Reduce exposure to noise
-At a minimum, doors and windows must be kept closed to reduce noise. Anyone
entering the room must also take care to reduce or eliminate noise as much
as possible, particularly if a patient has severe noise sensitivity.
-Open wards such as in emergency rooms are a DISASTER for M.E. patients.
They WILL without exception cause months or more of severe relapse in the
severely affected and may also cause a more immediate worsening of the
overall condition and should be avoided if at all possible. (Moderately
affected patients may also relapse severely in an open ward.) Sharing a room
with another patient is also inappropriate for the severely affected M.E.
patient and will also cause a high level of increased pain and suffering and
long term relapse.
-The problem here is not merely pain in the ears and painful or burning
eyes. Even low levels of noise or light (and other sensory input) can cause
a significant and prolonged worsening of the severity of the condition
overall, as well as symptoms including seizures, severe mental confusion and
inability to process even very simple information, episodes of paralysis,
problems with proprioception, balance and so on. Pain levels can quickly
soar to a 10/10 level even with moderate or brief noise or light exposure,
and recovery can be prolonged.
3. Reduce/eliminate all non-essential visitors
-As well as reacting badly to the extra noise and light exposure caused by
visitors, patients can also be made sicker by watching the movement of
someone in the room, and by the extra demands made on the brain when talking
and listening to speech is required.
-In the case of cleaners, these should be cancelled for the duration of the
hospital stay, both for the reasons outlines above, and because many M.E.
patients have sensitivities to many common chemicals used in cleaning
products. (Exposure to these chemicals may merely trigger headaches but in
some cases they can cause extremely severe relapse.)
-It is counter-productive and ill-advised to do hourly 'obs' (pulse and
blood pressure checks etc.) on a patient with severe M.E. as this will soon
cause them to deteriorate in both the short and the long term (or even
permanently).
4. Do not encourage patients to be more physically active (or upright
longer) than their bodies and hearts can easily tolerate
-Even sitting up in bed propped up by a few pillows counts as 'being
upright'
when someone is severely affected, and even 30 seconds or a few minutes of
being fully upright may be long enough to cause problems.
-Physical activity doesn't just include strenuous activity, but any
movement. Even simple movements or stretching of the muscles can cause a
worsening of the condition in the severely affected. Physical tasks may need
to be broken up into many smaller tasks with long rest periods in-between.
5. Try to schedule demanding tasks for the patients best time of day as much
as is possible
-Find out when the patient's best time of day is, and try to fit tasks in to
that window as much as possible.
-Don't expect that a patient will necessarily be able to do the same things
at different times of the day. Some tasks may only be possible at certain
times of day, or after a long period of rest. Making a patient do difficult
tasks at the time of day when they are at their most ill, can not only make
the task much harder or impossible, but also cause a far worse relapse than
if attempted at their most well time of day.
6. Try to reduce the patient's levels of cognitive exertion and sensory
input
-Sensory input includes; light, noise, movement, touch and also vibration.
(The vibration felt when by travelling by car can be excruciating. Even
being lifted from one bed to another can be unbearable.)
-Cognitive exertion includes talking and listening to speech, reading and
writing, watching TV, listening to music and so on. Talking as well as
listening to speech can be very difficult or impossible. Cognitive tasks may
need to be simplified and broken up into many smaller tasks with long rest
periods in-between.
-Some severely affected patients are unable to maintain consciousness for
more than short periods at a time. Some may only be properly conscious for a
few hours a day or less. Sometimes consciousness cannot be maintained for
more than 10 minutes or so consecutively (or less). Trying to force these
patients into consciousness for longer periods can only be
counter-productive, unfortunately. It can quickly make the problem even
worse. (Aside from certain medications and other treatments, what will help
improve this condition most is rest.)
-Some patients will require wheelchairs, but those who also have severe
orthostatic problems (problems with being upright, including sitting) must
not be put in wheelchairs at all and will need to be moved lying flat in bed
(or lying flat on the back seat of a car) at all times.
7. Be aware of any special dietary requirements
-Patients will often be intolerant of a large variety of foods. Some may
also have food allergies.
-There may also be strict requirements - due to the metabolic problems seen
in M.E. - that a patient eat every 2 or 3 hours (or even more often) and
that meals or snacks be high in protein and low in sugar and carbohydrate to
prevent relapse. (High sugar or high carbohydrate foods are often very
poorly tolerated by M.E. patients).
-Some patients will require assistance from a carer to eat (or tube feeding
in severe cases). Problems with swallowing can also make eating or drinking
difficult or impossible for the M.E. patient.
8. Be aware of the likelihood of negative drug reactions
-M.E. patients can react badly to almost every type of drug; particularly
those which act upon the CNS. Some severely affected patients are unable to
tolerate any drugs or over the counter vitamins and other supplements at
all, although many will have found a small number of products that they can
tolerate through much trial and error.
-Negative effects from taking certain medications can range from headaches
and feelings of being poisoned, to a severe worsening of the overall
condition, and so on. The relapse caused by medications can also sometimes
be semi-permanent; the patient does not regain the level of health they had
before they tried the new medication.
-All new medications should be started one at a time and at very low doses
(eg. 1/10th of a standard dose)
- If a M.E. patient is in hospital for surgery, please be aware that certain
precautions must be taken with anaesthesia for the safety and wellbeing of
the patient. Please read: Anaesthesia and M.E.
-Patients may also react badly to the chemicals contained in many personal
care products. If this sensitivity is very severe, visitors must avoid
wearing these products as much as possible before visiting.
9. Be aware of the need for extensive rest and problems with sleep
-Patients with M.E. need a lot of rest, but often find it impossible to get
much sleep or find initiating sleep very difficult, or can only achieve a
very low quality of sleep or sleep only for short periods at a time.
-It may take some patients 4 or more hours to initiate sleep. Being
interrupted with noise or light or visitors during this time may make that
period even longer, or prevent the initiation of sleep altogether. Even low
level noise can sometimes wake M.E. patients who cannot achieve normal deep
sleep and so are very light sleepers.
-Some patients cannot ever sleep for more than a few hours a time post-M.E.,
and so they need to be left alone as much as possible in order that they get
these much needed sleep periods. (Sleep doesn't necessarily help M.E.
symptoms much - often patients feel just as ill or even much worse on waking
than they did before they went to sleep - but missed sleep causes severe
worsening of symptoms/disability. The way it feels to have M.E. and not to
have slept much the night before is indescribably horrific, particularly
when M.E. is severe.)
10. Be aware that these aforementioned relapses can be significantly delayed
(and so they are not always visible on superficial examination), and that
they can be very serious and prolonged - or even fatal in a minority of
cases
-Don't make superficial (i.e. wrong!) judgements of a patient's ability
levels. If you want to know how a patient is feeling or if they can or can't
do a certain task, just ASK THEM!
- People with M.E. are very highly motivated to be as active as they
possibly can be (as anyone would be with so many restriction on their
lives), but they know that if they push themselves to do more than their
bodies can handle, the end result will be a huge LOSS of ability levels, and
a higher level of suffering, and so this is not in their best interests.
(The way people with M.E. get to be as active as possible is by carefully
staying within their post-M.E. limits. This also gives the patient the best
chance for their best possible long-term prognosis.)
-Do take the risk of relapse, and the patient's unwillingness to
unnecessarily become far more ill for days, weeks or longer - very
seriously. Many M.E. patients are suffering in a fairly extreme way already,
and their lives are so painful and limited as to almost be unbearable
already, without any additional worsening of the condition.
In conclusion
Just do your honest best. Achieving all of these tasks perfectly all the
time may not be possible, it's a lot to take in and a lot to think about all
at once, but everything that you can do to reduce the relapse from a
hospital stay will make a real difference and be much appreciated. There is
a huge difference between a 2 month long relapse and a 6 month relapse and
between symptoms worsening during this time to a 7/10 level rather than a
9/10 or 10/10 level... or between a relapse that merely lasts weeks or
months, or is semi-permanent or permanent.
(We appreciate what a hassle it is to accommodate the demands of M.E. only
too well. M.E. is an acute onset disease. We went from being normal and
healthy one day to having to cope with all these limits and disabilities the
next. Or from one hour to the next even. We get it that M.E. is very
unforgiving, overwhelming and just a huge hassle to deal with on just about
every level. We think so too. But this doesn't change the reality,
unfortunately.)
Following this text are some additional forms about specific symptoms and
disabilities etc. that patients may or not want to (or be well enough to)
fill out in order to give you more information about their needs, where this
is appropriate. Thank you for taking the time to read this paper.
-------
Permission is given for these documents to be freely redistributed by e-mail
or in print for any not-for-profit purpose provided that the entire text
(including this notice and the author's attribution) is reproduced in full
and without alteration. Please redistribute this text widely.
Constructive criticism and suggestions welcomed.
If you would like to link to this paper, please do so by using the links to
my site provided rather than a reposting of this text on a third-party
website as only the version on my site has live links and will continue to
be updated.
Available: http://www.ahummingbirdsguide.com/hospitalandcarernotes.htm
To download or print copies of this text in Word or PDF formats, click on
the link above. A large text version is also available.
Best wishes everyone,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
In all M.E. epidemic or endemic patients the patients represent acute onset
illnesses. The fatigue criteria listed here [in the CFS definitions] can be
found in hundreds of chronic illnesses and clearly defines nothing. Dr Byron
Hyde MD 2006

Hi, All!
An interesting piece in the "Daily Mail" supplement "Weekend" of 12 April
2008 (p.18) by Frances Hardy, featuring Esther Rantzen's daughter Rebecca.
Emily, her sister, is, of course, the one with M.E., and who underwent the
Lightning Process to much acclaim.
Of note is the reference to "chronic fatigue", but even more so is the
revelation that Emily "still has days when she has to take it easy".
Doesn't sound to me like she's cured.
BW
John

Go Dr Speedy!!!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
There is nothing in your experience of medical school, residency, or
practice with its gruelling hours and sleep deprivation that even
approaches [what] you feel with this illness. Fatigue is the most
pathetically inadequate term. M.E. sufferer Thomas English in 'Osler's Web'
by Hillary Johnson p 461 --

Sleepydust - About M.E. / Chronic Fatigue Syndrome
----
This is actually one of worst vids available on 'CFS' is in no way a ME vid
or ....something we should be promoting, FWIW. Terrible!!!!!!!
All about CFS but adds in a few ME facts to make them look more'credible'
sort of thing.
Same with http://phoenix-cfs.org
Not in any way a ME site, or about the neuro illness ME which occurs in
epidemic and spiradic forms, or in best interssts of ME suffreres etc.
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
All of these children, and the medical and scientific community as well,
could benefit if funds were dedicated for the complete and integrated
physical and technological examination of these [M.E.] victims. I call them
victims since I believe the medical community as a whole have abandoned
them, both children and adults. Lack of progress in developing both
scientific and medical understanding and treatment protocols are what I
believe to be the result of medical and psychiatric arrogance. Dr Byron
Hyde MD 2006 --

(reposting from another group)
NO, NO, NO!
The RSM Conference is on 'CFS/ME';
NOT on ME (G93.3, Neurogenic).
The RSM conference IS on the WS's psychosocial illness
MODEL, which they most often refer to as 'CFS/ME', and which
is NOT recognised by the WHO (i.e., no classification code).
It is NOT on ME (G93.3, Neurogenic).
It is NOT on CFS (Fukuda, et al, R53.82).
It is NOT on ME/CFS, which is also not recognized by the WHO
or assigned any classification code, and is an ill-conceived
'blend' of CFS (Fukuda, et al) and ME (G93.3, Neurogenic).
MANY more years will be wasted, as long as the public
continues to mix everything together and doesn't bother to
pay attention to the extremely important DETAILS and
DIFFERENCES of these various things.
Only YOU ALL can bring about a difference, by demanding that
correct terms/names/criterias and definitions be adhered to
at all times.
LK Woodruff

What a load of....
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"I wouldn't even bother with, "we are sick and not "fatigued." I feel it's
almost belittling to continue to debate this; the less we see the F word,
the better". Hillary Johnson, Author of 'Osler's Web' --

Can't belive someone got paid to do this!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"All that is essential for the triumph of evil is that good men do nothing"
Edmund Burke. --

No, you can catch LYME by going for a walk!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"Of course we need more research but we do not need to wait for "more
science" or the Holy Grail of a marker or the cause - even to "prove" that
it is "real." NO other illness has been held to this unattainable standard
and if we keep buying into this line of thinking we only hold ourselves
back. There is substantial objective, well-documented evidence of CNS,
immune, endocrine, cardiovascular, and autonomic nervous system
abnormalities, which indicate that M.E. is biologically, not
psychologically determined. We need to keep pushing for recognition and
utilization of what we have and can use now, not always waiting for more".
Jill McLaughlin --

http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article\
_id=552310&in_page_id=1774

Hi, Jodi & All!
(I agree with you, Jodi.)
Bearing in mind, of course, that this refers to Chronic Fatigue Syndrome
("first described in 1988") and not Myalgic Encephalomyelitis (but also
bearing in mind that probably most people assume the two terms to be
synonymous) does it do us any favours when this sort of 'study' is
published by the Journal of Chronic Fatigue Syndrome?
I think not.
By the way, is anyone able to explain the need for an "Arabic Scale of
CFS"? Clearly this refers to the Arabic 'race' and not the language. Is the
'CFS' suffered by persons of Arabic ethnic origin different, then, to that
suffered by persons of other ethnic origins? (Is there to be a call for
separate, Arabic and non-Arabic, 'CFS' approaches?)
"CFS is one of the medically unexplained physical symptoms. It is an
illness of unknown etiology and pathogenesis..." (So is 'CFS' a symptom of
an illness or an illness in itself?)
There are some very unhelpful assertions contained here (but, again,
bearing in mind that the reference is to Chronic Fatigue Syndrome and not
Myalgic Encephalomyelitis), eg:
"Psychological abnormalities exist in most patients."
"It has also been found that there is wide overlap of CFS with affective,
anxiety, somatoform, and personality disorders."
Then, of course, we have the all-too-familiar leap from discussing 'CFS' to
sneaking in that old chestnut of chronic fatigue:
"Taylor and Jason (12) suggest that a history of abuse, particularly during
childhood, may play a role in the development and perpetuation of a wide
range of disorders involving chronic fatigue."
"It is worth noting that those undergraduates were neither disturbed clinical
cases nor diagnosed institutionalized patients, and that none stated that
they suffered from CFS. Rather, they were young adults, and presumably
healthy people in general. However, most of them had just CFS-like symptoms
in different degrees. The same applied to the OC."
If I understand this correctly, the subjects of the study were a specific
group - Kuwaiti/Arabic undergraduate students - who were both "presumably
healthy people in general" but who also "had just CFS-like symptoms in
different degrees."
I'm not medically trained, but common sense tells me that being "healthy in
general" and having "CFS-like symptoms" are mutually exclusive
descriptions.
It also seems a little strange that a study on 'CFS' should be carried out
on subjects of whom "none stated that they suffered from CFS".
"Based on the cognitive model, the CFS has to have an underlying thought.
This idea or thought, if increased, becomes morbid and gives rise to an
obsessional thought. Recurrent and persistent thought of fatigue may
dominate the person. In this respect, repetition, cognitive awareness, and
secondary gain may play roles."
So, taking into account that the subjects did not claim to be suffering
from either 'CFS' or 'OC' in the first place, before the study, perhaps the
results obtained were due to "recurrent and persistent thought of fatigue"
dominating them: "One of the implications of the current findings is that
Kuwaiti undergraduates have some CFS- and OC-like symptoms, with women
reporting more CFS-like symptoms than men".
That the subjects were not ill enough to suffer any noticeable restriction
to their lives is borne out by the fact that "The ASCFS and the ASOC were
administered anonymously to small groups of undergraduates in a classroom
setting, during regular university hours."
Actually, I'm finding it too much hard going at the moment to unpick the
convoluted inverse logic pervading this 'study', so I'll save that for Part
2.
In the meantime, I'll make do with simply saying that I think it's
disgraceful that this has been published in the Journal of Chronic Fatigue
Syndrome.
End of Part 1.
BW
John
********************************************************************************
Date: Sun, 30 Mar 2008 13:55:46 +0200
From: "Dr. Marc-Alexander Fluks" <fluks@...
Subject: RES,NOT: CFS and Obsession Compulsion
Source: Journal of Chronic Fatigue Syndrome
Vol. 14, #3, pp 89-100
Date: Autumn 2007
URL: http://jcfs.haworthpress.com
https://www.haworthpress.com/store/Toc_views.asp?sid=4B5BQMAJCC1L8H5SUL28JMG0PBA
DDQMC&TOCName=J092v14n03%5FTOC&desc=Volume%3A%2014%20Issue%3A%203
Chronic Fatigue Syndrome and Its Association with Obsession Compulsion Among
a Non-Clinical Sample Using Questionnaires

If anyone was in any doubt the Journal of CFS has sold us out and has
*nothoing* to do with ME....
Read the blow and remove all doubt.
Evil tools!!!!!!!!!!!!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"This M.E. thing really should be banned internationally. It's far too
hideous for anybody to have to cope with" Ricky Buchanan, severe M.E.
sufferer --

https://www.haworthpress.com/store/Toc_views.asp?sid=4B5BQMAJCC1L8H5SUL28JMG0PBA\
DDQMC&TOCName=J092v14n03%5FTOC&desc=Volume%3A%2014%20Issue%3A%203

Friedberg, clinical professor in the Department of Psychiatry at the State
University of New York, made the following cardinal points:
"Several studies of graded activity-oriented cognitive behavioural treatment
for (ME)CFS, all conducted in England, have reported dramatic improvements
in functioning and substantial reductions in symptomatology.
----
WTF??
Putting the term ME in brackets next to a study very clearly involving
non-ME patients????
How can anyone get any idea other than CF/mentally ill CF/CFS = ME from
this? And that any study involving tired peopel is intercahnageable with
stuff done on a ME patients group.
Makes no sense term 'CFS' is put in commas either when term ME/CFS is
used:( Makes these very very important points very confused to nerw readers
surely:(
Plus, organophospahte poisoning is an entirely different disease than ME as
per Ramsay/Hyde etc. and as per the outbtreaks etc.
It is NOT a subgroup of ME:( No more than is MCS or IBS. ME doesn't just
mean any illness with a few neuro or immune symptoms, does it? Is a distinct
disease initated by a virus, an enterovirus.
So many great points that need to be made though...
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
'The thing that confused me the most when I was first catapulted into this
nightmare we refer to as ME, was the inconsistencies. That I was expected
to swallow every crazy explanation the "experts" came up with. They are
manipulative, pathetic and transparent attempts to maintain control - to
absolve the authorities and society in general of all responsibilities.
Gurli Bagnall --
Stephen Ralph <stephen.e.ralph@...

Hi, All!
I've just read someone's account of doing the Lightning Process in the
newsletter of a local support group. Fascinating.
Apparently, M.E. sufferers' nervous systems get stuck in the 'fight or
flight' mode, with adrenaline and cortisol continually pumping around our
bodies, giving rise to an array of symptoms.
Apparently, the Lightning Process stops the continual release of these
hormones through a combination of "neurolinguistic therapy, CBT, self
hypnosis and visualisation".
The author doesn't claim to be cured of M.E.:
"...at the moment I still have M.E. and if I don't find time to do the
Lightning Process it comes back. However, it has provided me with an
amazing way of controlling the M.E. symptoms..."
Ah - so it's not a cure, but a method of controlling symptoms.
From everything I've read about the Lightning Process (and other similar
'therapies'), what it boils down to is:
(a) Don't get uptight.
(b) If you do, chill out.
There you go.
(That'll be £750, please.)
BW
John

*please repost widely* *please repost widely* *please repost widely*
*please repost widely* *please repost widely*
PLEASE read this paper if you are a M.E. advocate or sufferer and you use or
support the terms 'ME/CFS' or 'CFS/ME'...
-----
Problems with the use of 'ME/CFS' by M.E. advocates (Summary)
By Jodi Bassett, March 2008
Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease
which was formally classified as an organic neurological (CNS) disease in
the World Health Organisation's International Classification of Diseases in
1969 with the code G.93.3.
M.E. is a distinct, scientifically measurable and testable, acute onset,
organic neurological disease. 'CFS' in contrast, is not a distinct disease.
The man-made financially motivated 'CFS' definitions describe no distinct
patient group. 'CFS' doesn't exist. The use of the mixed term 'ME/CFS' by
some former M.E. advocates (and others) makes no sense at all, but is
unfortunately becoming far more common.
Many of those M.E. advocates who use the term 'ME/CFS,' say, (correctly!)
that the distinct neurological disease M.E. and the man-made bogus disease
category of 'CFS' are NOT the same.
But they then often also say things like; 'ME/CFS is a serious disorder
which occurs in epidemic and sporadic forms, is initiated by a virus (most
likely an enterovirus), and is defined by severe fatigue...' etc. which
incorrectly imply that the name and definition of 'CFS' is synonymous with
authentic M.E.
'ME/CFS' advocates often (bizarrely) pour scorn on the Wessely school's use
of the term 'CFS/ME' and complain about how ridiculous it is that anyone
could think that 'ME/CFS' and 'CFS/ME' were the same thing. You also
sometimes read comments like; 'This recent (M.E.) CFS study showed that
patients had....' which implies again, that 'CFS' is just another name for
M.E.
It's crazy! You just can't argue that M.E. and 'CFS' are not the same, and
then use the term 'ME/CFS' (or 'ME-CFS' or 'CFS/ME') and expect to be taken
seriously or to get the points across that we desperately need to. Using
these terms CONTRADICTS whatever else you say about M.E. and 'CFS' not being
the same. It makes what you are saying completely nonsensical and illogical.
That's only the start of the problem however.
Why is 'ME/CFS' being used so much more often?
It seems like using 'ME/CFS' is really just about popularity, very often,
sadly. That it is just about playing both (or all) sides and so keeping the
maximum number of people superficially happy generally, and superficially
happy with the individual advocate or group. These mixed terms are accepted
by many propaganda supporting 'CFS' researchers and 'advocacy' groups, by
people misdiagnosed with 'CFS' who don't have M.E. as well as by some
genuine neurological M.E. patients. So supporting these vague mixed terms
makes an advocate or advocate group popular with the largest possible number
of patients and patient groups etc. But is that really a good enough reason
to work against the best interests of the patient group (or groups) they
claim to be advocating for?
None of the justifications made by individual advocates or advocacy groups
for using the term 'ME/CFS' hold up. These are some of the most common;
a.. The claim that we have to use the term 'CFS' (and so 'ME/CFS') because
some of the recent research (at least partly) involving M.E. patients has
been done under the name 'CFS' is bogus.
Of course we should reference such research that is relevant, but this
could very easily be done by writing a short explanation of the confusion
between M.E. and 'CFS' and including this in each article or piece of
research. This is the type of vital basic information that even without the
terminology issues, we need to get out there as a first priority anyway. To
say this notification has to be done with the terminology itself is
ridiculous. Yes the term 'ME/CFS' lets you claim some of the relevant to
M.E. 'CFS' research, but you also blindly claim the other 95% (or more) of
'CFS' research which isn't relevant to M.E. and which directly harms M.E.
patients (etc.).
b.. The claim that 'ME/CFS' is about getting those M.E. patients
misdiagnosed with 'CFS' to be able to find information about M.E. also
doesn't
hold up to scrutiny.
Again, yes, this is something that it is very important that we do, but it
is misleading to suggest that this can only be done using the main
terminology we use. It could be done so simply with a short explanation
included in each text. This way you would also avoid giving patients
misdiagnosed with 'CFS' who DON'T have M.E., the mistaken (and harmful) idea
that they do have M.E. and that M.E. and 'CFS' are the same, and so on.
c.. The claim that 'ME/CFS' is a temporary term, and that eventually the
'CFS' part will just drop off and our only chance for change is gradual
change is false.
This exact strategy has been tried and tried again for the last 20 years
and it has failed totally. Trusting that if we compromise ourselves now (by
mixing M.E. and 'CFS') that we will be rewarded with something that we want
to happen but which harms the interests of the vested interest group
involved - without any type of force being exerted on our part - is just
fanciful, unfortunately.
d.. The claim that we have to use this term because it is used in the 2003
Canadian 'ME/CFS' definition is also bogus.
Yes, specific parts of the paper are relevant to M.E. to some extent and
worth supporting, but this is NOT a pure M.E. definition, it is at best a
mix of M.E. and 'CFS' and does not select a 100% M.E. patient group. For
each good part of the paper there is also another scientifically
questionable and psychologically biased part. It reinforces some of the most
harmful myths about M.E. It does not justify the use of 'ME/CFS' by genuine
M.E. advocates.
For every problem 'ME/CFS' supposedly solves, it creates many more far worse
problems, and these same primary problems can all be solved simply in other
ways that have NO HUGE DOWNSIDES!
So who does benefit from Myalgic Encephalomyelitis being mixed with 'CFS'?
That is the real question we should all be asking. The answer of course is,
yet again, powerful financial vested interest groups such as the medical
insurance industry, the vaccine industry, the government and others who are
directly saving themselves millions or even billions of dollars through this
'CFS' and 'ME/CFS' obfuscation.
It is hardly a coincidence that Professor Simon Wessely - the most powerful
and influential of the group of doctors who have made themselves the tools
of insurance companies - is the person credited with inventing the mixed
term 'CFS/ME.' The mixing of M.E. and 'CFS' in this way serves vested
interest groups well.
This is why so many of the very worst government reports (and so on) in the
UK, Australia and the Netherlands which talk about patients as if they were
mildly ill malingerers who could easily improve if not recover from their
'fatigue' if only they could be convinced to try CBT or GET, and so on, (a)
often use terms such as 'CFS/ME' or 'ME/CFS' in the titles and throughout
and (b) very often mix in some of the facts about M.E. (ie. symptoms,
history, severity/disability etc.) with bogus information about 'CFS' while
of course the entirety of the all important CONCLUSIONS given (ie.
aetiology, psychological status, improvement of symptoms, response to
treatments and recovery rates) are drawn exclusively from non-M.E. 'CFS'
patient groups.
'ME/CFS' and 'CFS/ME' lets these groups have it both ways. They get to
continue happily with their unscientific and unethical 'CFS' obfuscation
agenda, and they get to do so with far less opposition from the patients
they're harming, or even with the support of some of these patient groups.
This is why articles and studies which mix together facts about M.E. and
'CFS' are even more dangerous and harmful in many ways than pure 'CFS' ones.
The 'ME/CFS' concept: (a) is confusing, (b) is illogical, (c) strongly
reinforces the same misinformation which is the cause of our problem (ie.
that M.E. and 'CFS' are the same), (d) benefits the interests of the same
vested interest groups which benefit from 'CFS' in the exact same way, (e)
reinforces the position of vested interest groups that 'CFS' is a real
disease and that their bogus 'CFS' work/research is scientifically valid,
(f) does nothing to counter the real problems which are the definitions of
'CFS' and the involvement of vested interest groups in what should be a
purely scientific discussion, (g) greatly reduces the credibility of M.E. by
aligning it with the bogus disease category of 'CFS,' (h) lessens the impact
of the legitimate facts about M.E., (i) can work to cut M.E. off from its 70
year history, previous case studies, research and definition, and its
correct WHO classification and so on; just as 'CFS' does, (j) harms M.E.
patients and those misdiagnosed with 'CFS' who don't have M.E. in the same
way 'CFS' does, and (k) holds back the fight for justice and recognition of
authentic neurological Myalgic Encephalomyelitis immeasurably.
The mixing of M.E. and 'CFS' was invented by these vested interest groups
and it is a tool they use to good effect and as much as possible. Clearly,
legitimate M.E. advocates using THE SAME TWISTED AND OBSFUCATING STRATEGY is
not a good idea and is only going to further their interests instead of
ours.
What can M.E. advocates learn from how other diseases have gained
recognition and justice finally?
Us using 'ME/CFS' now is as short-sighted as it would have been for HIV and
AIDS activists years ago, when the name was "Gay Related Immune Deficiency
Syndrome' or GRIDS, to have pushed for the acceptance of 'HIV/GRIDS' or
'AIDS/GRIDS.' Or if multiple sclerosis advocates had pushed for the
acceptance of MS/Hysterical paralysis years ago instead of just MS. People
pushing now for the so-called 'compromise' of 'ME/CFS' is just the same -
just as unwise - except that 'ME/CFS' is far, far worse.
This is because our problem isn't just that the term 'CFS' is offensive and
inaccurate but that the term 'CFS' is inextricably linked, and synonymous
with the DEFINITIONS of 'CFS' and that this fictional 'CFS' disease
construct is, along with the unethical involvement of groups with financial
vested interests in what should be a purely scientific discussion, the cause
of our entire problem!
If the aforementioned groups had not chosen to fight hard for what was
scientifically correct and right, instead of settling for the same sort of
unnecessary hijacking of reality that 'ME/CFS' advocates are suggesting.
then who knows how much this may have held these patient groups back, or for
how many years or decades their positive outcomes may have been delayed
because of it?
Successful advocacy campaigns have achieved success in the past through
guts, determination, a willingness to fight for the facts and what is
scientifically right, refusing to compromise (or sell) themselves and their
integrity. We have to do the same if we want the same type of success.
This isn't just about terminology, it is about definitions
The terminology is often used interchangeably, incorrectly and confusingly.
But the DEFINITIONS of M.E. and 'CFS' are very different and distinct, and
it is the definitions of each of these terms which is of primary importance.
Having said that, very often, advocates that have compromised with the
terminology have also compromised and warped the definition of M.E. too.
So very often, where there's smoke there's fire!
When people use the term 'ME/CFS' it should set alarm bells ringing for you
to be very wary that they haven't also 'compromised' and warped the
definition of M.E. and the known scientific facts about M.E. and that they
don't now consider people with Fibromyalgia, various post-viral fatigue
syndromes or Lyme disease as 'ME/CFS' patients or as so-called 'ME/CFS
sub-groups' or support any other of the 'CFS' myths as relating to M.E.
Most often when the term 'ME/CFS' is used, the text refers to a bizarre mix
of facts relating to both M.E. and 'CFS' or instead purely facts relating to
any of the various bogus 'CFS' definitions. (The same applies to the terms
'CFS/ME,' 'CFIDS' 'and Myalgic 'Encephalopathy' etc.)
In conclusion...
'ME/CFS' just doesn't make sense. Why weaken our position so much for no
good reason? - because make no mistake, the unadulterated facts about M.E.
(the outbreaks of M.E. and the links to polio outbreaks (and the polio
vaccine), how much we know about M.E. and how much we knew even before 1988,
who is behind 'CFS' and why, and all the needless deaths and abuse knowingly
caused by the 'CFS' scam) are a far more compelling true story than any
wishy-washy and contradictory tales defending 'CFS' or 'ME/CFS.'
We have to learn to see past the SUPERFICIAL and be far more critical about
which information (and advocates and groups) we accept as being
scientifically sound, relevant to us, and in our best interests too. The
fact that an article might merely mention some facts about M.E. along with a
lot of 'CFS' propaganda, or say that 'CFS' or 'ME/CFS' is 'real' or 'is not
psychological' or merely mention some physical abnormalities or implicate
various viruses in some way, or use the term 'ME/CFS' or 'CFS/ME' is nowhere
near good enough.
(Most of the very worst articles and reports do many or even all of these
things!)
Many supporters of 'ME/CFS' have a tie to the big vested interest groups
involved, while others are motivated by their own vested personal interests.
Undoubtedly, some M.E. patients are simply too severely ill and disabled to
do more than very basic reading or to engage in any type of critical
thinking and so have been persuaded to support 'ME/CFS' by other advocates
they've trusted to steer them in the right direction - and have had that
trust cruelly abused. There are no doubt many different reasons for the rise
in 'ME/CFS.' But regardless of the different motivations, the results will
be just the same unfortunately. That's the problem.
If you open your mind and forget for a minute about how commonly 'ME/CFS' is
used and about all the justifications you've been given for it - and look at
it logically - it really is hard to come to any other conclusion than that
'ME/CFS' can only impede our fight for justice and recognition.
The time for hoping for non-confrontational gradual change, compromising
ourselves for our abusers and trying endlessly to work within the completely
bogus 'CFS' framework ON THEIR TERMS has to be over. 20 years is enough.
The definition of INSANITY is doing the same thing over and over and
expecting a different result.
It is time that we fought for authentic Myalgic Encephalomyelitis in name,
definition and World Health Organization classification, without compromise.
It is also time we all fought for the bogus financially motivated disease
category of 'CFS' to be completely abandoned - without compromise - for the
sake of every patient group involved; M.E. patients and all those
misdiagnosed with 'CFS' who do not have M.E. alike.
Let's do exactly what these vested interest groups are hoping we WON'T do!
-------
For more information please see the far more detailed full-length text
(which also includes some excellent quotes from many other M.E. advocates
and experts on this topic) at:
http://www.ahummingbirdsguide.com/problemswithmecfs.htm
See also: The Terminology and Definitions Explained and What is Myalgic
Encephalomyelitis?
To download or print copies of this text in Word or PDF formats, click on
the link above.
A final plea: It is never to late for YOU to abandon 'ME/CFS' and to start
fighting for M.E. in name and definition. We need you fighting hard and
strong for M.E., yesterday! Any type of blame etc. for the past is
irrelevant and unhelpful. What matters is now, and stopping things becoming
even worse. The need is so urgent.
Permission is given for these documents to be freely redistributed by e-mail
or in print for any not-for-profit purpose provided that the entire text
(including this notice and the author's attribution) is reproduced in full
and without alteration. Please redistribute this text widely.
If you would like to link to this paper, please do so by using the links to
my site provided rather than a reposting of this text on a third-party
website as only the version on my site has live links and will continue to
be updated.
Thank you to all those M.E. advocates who offered valuable criticism and
suggestions as I was writing this paper.
Best wishes everyone,
Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
'Any disease process that has major criteria, of excluding all other disease
processes, is simply not a disease at all; it doesn't exist. The CFS
definitions were written in such a manner that CFS becomes like a desert
mirage: The closer you approach, the faster it disappears.' Dr Byron Hyde
M.D. 2006
The current confusion over the name in the US is that CFS, the fabricated
condition that somehow became officially synonymous with the real disease
Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic
Encephalopathy. The problem is that both names share the initials ME, and
since Myalgic Encephalopathy will retain the terribly misleading CFS
criteria this name is nothing more than a clever diversion to draw our
attention away from the real issues. John Anderson, M.E. advocate
The entire concept of a "New Name" is wrong. There is no need for a "new
name" for an "old falsehood". There already IS a correct name, Myalgic
Encephalomyelitis with a correct ICD code. We need the correct name and the
proper definition, not a new face on an old lie that still functions to
obscure and deny the reality of Myalgic Encephalomyelitis. We need to
educate ourselves, families, doctors, social service people, politicians,
journalists, etc about the existing disease Myalgic Encephalomyelitis. Not
fall into yet another ploy of those who have hidden the truth. M. Beck, M.E.
patient since 1983

Makes it all sound like it is psychological vs physical, when real issue is
it is about ME patients being mixed with patinets with entirely different
diseases and treated as homogenous patient group...
Some with 'CFS' are psychologicvally ill!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
Patients fulfil the loose CFS criteria who have "fatiguing" disorders other
than M.E. and may include those with fatigue due to primary sleep
disorders, nutritional deficiencies, stress and a number of psychiatric
conditions. With the existence of different definitions of CFS, it has thus
come to mean different things to different people. It is the use of
increasingly wider, less specific criteria and the focus on fatigue has
created much confusion and misunderstanding during the past decade. Jill
McLaughlin --

EXACTLY John!!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"I used to be able to think. My brains circuits were all connected and I
had a spark, a quickness of mind that let me focus well in the world. I
could reason and total up numbers; I could find the right word, could hold
a thought in mind, match faces with names, converse coherently in crowded
hallways, learn new tasks. I had a memory and an intuition I could trust.
All that changed when I contracted the virus that targeted my brain. More
than a decade later, most of the damage is hidden. Invisible to the naked
eye but readily seen through brain imaging technology are areas of scar
tissue that constrict blood flow. The lesions in my grey matter appear as a
scatter of white spots like bubbles or a ghostly pattern of potshots."
Floyd Skloot in 'In the Shadow of Memory' --

Hi, All!
I fear that the phrase "myalgic encephalomyelitis (ME), also known as
chronic fatigue syndrome (CFS)" and the term "ME/CFS" do not really help
with efforts to have M.E. accepted as a distinct illness.
BW
John
********************************************************************************
1a. ME -Invisible disease -is now easier to read
Posted by: "Jan van Roijen" j.van.roijen@... jevaner
Date: Tue Mar 18, 2008 9:54 am ((PDT))

Great to see an acknowldegement tyhat so may of us canb't protest in
person...and a solution to some extent!:)
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--

Well, yeah, some good bits....but confused by the issue of 'ME/CFS'...does
this relate to ME or 'CFS'
What does it mean when it says 'these diseases'
Isn't exercise intolerasnce only relevant to ME patinets and not just anyone
who has some fatigue and qualifies as CFS??
This article would be great if it also stood up unambigously for ME, and
separateed ME and 'CFS'
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--

There is no evidence at all yet that Kerr is dealing with ME patinets, and
not just some variety of 'CFS' patinets.
Yet this Kerr reseaecgh has been met with overwhelming positivity and even
cheering on some ME groups, I don't get it.
Don't we have to be critical about what we accept as actually relating to
ME? Or is the fact he simply used the term 'ME/CFS' enough?
It often seems like all a Dr has to do is say 'ME/CFS' and talk about
finding physical signs of illness and everyone blindly accepts that what
they're saying is about ME, without question.
When really there is a very good chance it's just a study on people with
PVFS's and NOT ME patinets. Semms far more likley this is a 'CFS' study and
nothing to do with ME...there is not one speck of wevidence that says
otherwise:(
Hasn't Kerr collaborated with Wessely in thye past? Or waqs that some other
gene guy?
Sigh.
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--

Hi, Jodi!
Hear, hear!
BW
John
********************************************************************************
2a. Re: The International ME/CFS Conference 2008
Posted by: "Jodi Bassett" jodibassett@... hummingbird_247
Date: Sun Mar 9, 2008 12:42 am ((PST))
Only 2 sugroups are relevant; ME and NOT ME.
Subgroups of different tired people will help nobody!:(
Not them and not ME patinets.
Sigh.
Best wishes,
Jodi

:)
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
These results provide evidence of reduced cardiac output in [M.E.]. They
suggest that blood pressure is maintained at the cost of restricted flow,
resulting in a low flow circulatory state. Thus, there might be periods in
daily activities when demands for blood flow are not adequately met,
compromising metabolic processes in at least some vascular compartments.
This finding would signify that [cases of M.E.] might be explained and
potentially treated as low circulation problems. Several deficiencies
capable of affecting cardiac output have been reported in [M.E.], including
lower blood volume, impaired venous regulation, and changes in autonomic,
endocrine, and cardiac function. The abnormalities causing a reduction in
cardiac output thus may be dispersed over multiple systems. Dr Peckerman
M.D. --

The Year of No Compromise
Greg Crowhurst
(Permission to Repost )
When you look closely at what the psychiatric lobby are actually
recommending , the tactics they are using
and the practices they are advocating, it becomes extremely clear that
they do not benefit the ME sufferer.
The issues though are not always that obvious or easy to grasp ; not
given the physical isolation, the severe illness, the brain fog and
the other profound levels of disability that people are experiencing
with WHO neurological Myalgic Encephalomyelitis.
This is a simple summary of the inferred messages underpinning the
psychiatric paradigm , currently being heavily promoted in the UK:
The recommendations .
do not investigate ME/CFS patients .
do not provide special facilities for ME/CFS patients other than
psychiatric clinics .
do not offer special training to doctors about the disorder .
do not offer appropriate medical care for ME/CFS patients .
do not offer respite care for ME/CFS patients .
do not offer State benefits for those with ME/CFS .
do not conduct biomedical research into the disorder .
The tactics.
the wreaking of havoc in the lives of ME/CFS patients and their
families by the arrogant pursuit of a psychiatric construct of the
disorder .
the attempts to subvert the international classification of this
disorder from neurological to behavioural.
the propagation of untruths and falsehoods about the disorder .
the building of affiliations with corporate industry .
the insidious infiltration of all the major institutions .
the denigration of those with ME .
The practices
the attempt to make "ME" disappear in a sea of chronic fatigue.
the refusal to see or acknowledge the multiplicity of symptoms
the ignoring and misinterpretation of the biomedical evidence.
the suppression of published findings .
the vested interests .
The impact
the arresting and sectioning of protestors .
the silencing of ME patients, through being given a psychiatric label .
the suppression of dissent .
the labelling of ME patients as the "undeserving sick" , as malingerers
.
the forcible removal of sick children and adults from their homes.
It is poignant how an institutionally supported prejudice against people
with ME has arisen, based on nothing more substantial than
supposition and opinion., carefully disseminated.
You have to be very careful how you discern the truth; it is an
important issue in the corporate wall of collusion surrounding the
physically sick people who have ME..
We have to be very clear about what is the truth about ME and what is
either deliberate, naive or ignorant misinterpretation or
misrepresentation..
The impact of the above strategy on people `s lives is
catastrophic . Who can measure the suffering ?
You have to ask yourself "What do I want? Is it this? And if it is
not, then make sure your MP knows about it. Make sure people understand
you have a physical disease acknowledged by the WHO. Make sure you do
not contribute to the wrong pathway. Let us have no compromise on this.
Let us stand up for Truth.
This has never been more necessary than it is now. We have to stand
firmly behind the biomedical knowledge of this illness ; we have to
make sure the true physical needs are heard and responded to.
Make the theme for ME Awareness Week : the Year of No compromise!
Ref :
Corporate Collusion, Malcolm Hooper, Eileen Marshall, Margaret Williams
2007 http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

Only 2 sugroups are relevant; ME and NOT ME.
Subgroups of different tired people will help nobody!:(
Not them and not ME patinets.
Sigh.
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
ve power by withdrawing their support. John Anderson
--

http://www.investinme.org/IiME%20Int%20Conference%202008/IIME%202008%20Internati\
onal%20ME%20Conference%20Agenda.htm
http://www.investinme.org/Documents/MECFS%20Conference%202008/MECFS%20Conference\
%202008%20Poster.pdf
http://www.investinme.org/IiME%20Int%20Conference%202008/IiME%202008%20Internati\
onal%20ME%20Conference%20Home.htm
http://www.investinme.org/Documents/MECFS%20Conference%202008/IiME%20MECFS%20Con\
ference%202008%20Flyer.pdf

Well yeah, but using the stupid unhelpful term 'ME/CFS' then pouring scorn
on others for using 'CFS/ME' is completely illogical ....and makes us look
nuts!:(
Not to mention makes it look as if everythig relating to or written about
'CFS' relates to ME...which is the entire bloody problem in the first place
surely. Sigh.
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"Of course we need more research but we do not need to wait for "more
science" or the Holy Grail of a marker or the cause - even to "prove" that
it is "real." NO other illness has been held to this unattainable standard
and if we keep buying into this line of thinking we only hold ourselves
back. There is substantial objective, well-documented evidence of CNS,
immune, endocrine, cardiovascular, and autonomic nervous system
abnormalities, which indicate that M.E. is biologically, not
psychologically determined. We need to keep pushing for recognition and
utilization of what we have and can use now, not always waiting for more".
Jill McLaughlin --

Mary is an M.E. sufferer in Norfolk (UK) who is feeling pretty low at the
moment with a relapse, worried that she'll never improve, or will even get
worse. She would really like to be in contact with people who have either
improved significantly or are able to keep on top of things and are upbeat
in attitude. If you fit the bill, please give her a call on 01692-402053.
Thanks.

No! The group is the same the history reamins the same and the member list
is the same and moderation settings are the same. Is same group with new
name/URL.
The only thing is the cahnage of email adreess you have to send emails to,
and the website URL:)
Any mopre q's anyone just ask!!
Thnaks Tesss:)
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"This M.E. thing really should be banned internationally. It's far too
hideous for anybody to have to cope with" Ricky Buchanan, severe M.E.
sufferer --

Sorry for the inconvenience everyone, it had to be done!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
'If only someone with sufficient influence would question where "Wessely
School" psychiatrists get their opinions from. If this were to happen, then
the rampant metastatic spread of their unproven beliefs would soon stop
because their opinions are not -- and cannot be -- based on biomedical
evidence. But then, "policy-based evidence" is not required to be based on
biomedical evidence and that, of course, is its value to Government.'
Eileen Marshall and Margaret Williams --

Hi Jodi Do we need to do anything to stay on the group?
Thanks...good name change
tess

Hello,
The moderator of the ME-CFIDS-CFS_activists_united group has changed the group's
name.
This means that both the group's email address and the group home page
location have changed.
The group email address:

I just saw this for the first time. Excellent question - why ARE so
many former neurogenic ME advocates succumbing to the ruse
of "ME/CFS" ?
Jo

What is a Rheumatologist?

WHEN WILL THEY EVER LEARN?
by
Gurli Bagnall
When a moral debate is in progress, the views of those who are affected are
often ignored or dismissed as irrelevant. Be the latter six or sixty, they
are all regarded as minors who have no legal say in the decision making
process.
A good example is the voluntary euthanasia debate. The conscience vote cast
by politicians is often determined by personal religious beliefs which
override the beliefs of all others including the terminally ill.
Those in the medical profession who argue vehemently against voluntary
euthanasia, do so on the grounds that, ³I¹m here to save lives! Not to
kill people off!² If only their ethics were as strong when committing one
of those many preventable medical ³errors² which contribute to the
iatrogenic epidemic.
Common to nearly all who argue against, is the use of the word "euthanasia"
without qualifying it by ³voluntary². This gives the impression that a
death sentence has been passed by others rather than death being the choice
of someone suffering unbearably.
Such strategies are dishonest and whatever the case, if it can only be
argued dishonestly, then there is no case. A patronizing attitude is in
no way, shape or form, kindness, and it generally hides an agenda that
bears no relationship to the wishes of those affected.
In the current debate over what to call ME, we see both strategies in
abundance.
In the 1980s when the name was changed from ME to CFS, we were told that CFS
described the condition better. Of those shoved into the CFS melting pot,
genuine ME sufferers were not convinced then and, judging by Co-cure and
various support groups, they are not convinced now. One would have thought
that after twenty years, those preaching in favour of CFS could have come up
with a different argument if for no other reason but to relieve the boredom.
Those who favour CFS/ME or ME/CFS seem to be under the impression that
Myalgic Encephalomyelitis sufferers will be delighted to accept this
compromise. But we have already lived with that particular compromise for
some years and we are still ³kindly² being told that this choice
describes
the disease the best. As for the inclusion of MEÅ . hang on to your hats,
chaps! We can now have it both ways - we can choose whatever we want, be
it: ³itis² or ³opothy².
For goodness sake! This is a serious matter. It is not a child¹s game!
We
do not live with Alice in her Wonderland. We live in the real world where
the name of a disease influences impressionable members of the medical
profession to the point where their prejudices turn to outright abuses.
Having seen and experienced the disastrous effect CFS had and has upon our
lives, we now hear that certain experts in the States have taken up the
good fight for a "fair name". No wonder outsiders are often confused! The
cool, calm and kindly manner of the "experts" is at odds with the patients'
very apparent anger.
As a few crocodile tears slide down the "experts" cheeks, they say: "Oh
please! There's no need to thank us! ME/CFS WILL be the official title and
we'll fix it so you can use 'itis or 'opothy. The choice is yours!"
Well....hallelujah!
I do not believe there are many under any illusion about the merry-go-round
that is currently being planned for ME patients if the ³experts² are
allowed to bulldoze this proposal through.
Frank Twisk had this to say in his recent posting to Co-Cure:
³My disease [has] already got a fair name: Myalgic Encephalomyelitis. A
name which is used in medical literature for more than 70 years, a name of a
disease well defined by dr. Melvin Ramsay, a name used for all epidemics in
the last century, and above all, a name acknowledged by the WHO as a
(neurological) disease.²
(Nightingale definition/Byron Hyde, 2006:
<http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf
I could not agree more and a realistic explanation for the insistence in
continuing the CFS lie, is long overdue.
Remember the old song, ³Never Smile at a Crocodile²? Well, the one that
is smiling so ³kindly² at us (as it murmurs sweet nothings about
³sympathy
and understanding²), is anticipating our further disenfranchisement from
society in general, and the severing of ME from official recognition by the
WHO in particular.
Is it acceptable to refer to P/CFS (Parkinson's disease) , MS/CFS (Multiple
Sclerosis), MN/CFS (Motor Neurone disease), C/CFS (Cancer), HF/CFS (Heart
failure) etc.? With all the connotations that accompany CFS, it would be
outrageous to expect sufferers to have the added burden of such insulting
nonsense. Without doubt, there would be a hue and cry, and a tarring and a
feathering after which those no-longer-smiling crocodiles would be run out
of town!
Suffering a disease like ME requires great inner strength because of the
constant pressure to deal with incorrect diagnoses, physical and mental
abuse, and attacks upon our honesty and integrity - not to mention the
imposed financial hardship.
We need to continue to be strong and to insist that the disease we suffer
is: MYALGIC ENCEPHALOMYELITIS which is categorized by the WHO as a
NEUROLOGICAL DISEASE.
Fatigue is to ME as it is to all of the above conditions. It is one of
the many nasty symptoms that plague sufferers. How can it be that so many
doctors do not have the intellectual capacity to understand this?
Kind regards to all.
Gurli Bagnall (URSULA@...)
7 February, 2008

PROPAGANDA, THE RETURN TO THE VICTORIAN POOR LAW AND M.E.
2 February 2008
Listening to the February 2nd 2008 `PM' programme on BBC Radio 4 with
the item including David Freud former investment banker brought in
to assist the New Labour Government's `Pathways to Work' policy was
extremely alarming. You can `listen again' to the interview at:
www.bbc.co.uk/radio4/news/pm/
The general BBC News article on the matter is available in full at:
http://news.bbc.co.uk/go/pr/fr/-/1/hi/uk_politics/7223687.stm
http://news.bbc.co.uk/1/hi/uk_politics/7223687.stm
Earlier similar comment/ call to action is available at:
www.bbc.co.uk/dna/actionnetwork/F?thread=3944678
That such dreadful politicking elites are arbitrarily asserting that
two thirds of claimants of sickness benefit are illegitimate, should
face serious penalties for "refusing" to work and that their own GP/
clinical specialists should be further taken out of the decision
process utterly beggars belief. This is bad enough for sick people
whose illness is properly recognised by the UK Government and whose
recommended NHS treatment is helpful and science-based but, for ME
patients (as opposed to those with `chronic fatigue'), where this is
spectacularly not the case, the outlook is truly frightening and will
hit particularly hard from next autumn. (See:
http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
I have to say that I feel the whole corrupted political establishment
is bearing down upon ME patients to rob them of proper care,
treatment and support that is rightfully theirs by virtue of years of
tax and national insurance payments: not to mention morality. NHS
doctors are generally well-meaning but are misinformed and hopeless
concerning ME; there is little help from social services and patients
feel alone and very worried indeed about the abuse, harassment and
mistreatment that is increasingly heading their way. The `medical'
check that ME (Myalgic Encephalomyelitis) patients shall be subjected
to will be psychiatry-biased and far from `independent'. Also,
private employment agents of the state that are misinformed and ill-
equipped will continuously harass `the undeserving sick' on
a `payments by results' basis. How many patients will resultantly
become much worse due to such harassment, psychiatric mistreatment
and reduced welfare support? How many more patients will be condemned
to a premature death like 32 year-old Sophia Mirza? (See:
www.meactionuk.org.uk/Inquest_Implications.htm
Make no mistake; what we are witnessing in the UK is a return to a
form of the Victorian Poor Law Speenhamland rules... Michael
Moore's use of the current British system as the model of excellence
in his otherwise very good `Sicko' film looks increasingly misplaced.
As a former member of the Labour Party I am in profound shock as to
what the party leadership seems to have become: political whores to
corporate lobbyists and destroyers of genuine inclusive democracy?
David Cameron's/ Tory Front Bench rhetoric is no better and
parliamentarians generally seem to be increasingly self-serving and
spineless. I hate what our country has become: not `lions led by
donkeys' but sheep led by wolves (and morally and intellectually
bankrupt sell-outs). The real dishonest and `illegitimate' burden on
British taxpayers comes not from the ordinary workers who become ill
in the perverse society that is neo-liberal Britain; it is the
disgusting super-rich including many investment bankers - who do
all that they can to avoid paying their fair due to the inland
revenue. To see some of the spirit of what may inform the policy
stance and activities of the likes of David Freud I can think of
fewer better examples than the life's work of his arch propagandist
relative Edward Bernays see:
http://en.wikipedia.org/wiki/Edward_Bernays
To those readers fortunate not to be afflicted by ME and to those
that think ME is the same thing as mere `chronic fatigue' or it that
it is all too complicated to be concerned with then think on: if you
or your loved ones are incapacitated with ME and so many are these
days your private or state-provided welfare and medical treatment
is very far from secure. What is currently driving UK welfare and
psychiatrist-biased medical policy towards physically incapacitated
neurological ME patients (long recognised as such by the World Health
Organisation at ICD-10-G-93.3) is not science and it is certainly not
morality; it is delusional and immoral spin. (See:
www.meactionuk.org.uk/Corporate_Collusion_2.htm
K. Short.
ME Patient.
[Permission to repost.]

Before we do something we might regret shouldn't all the facts be on the
table? Its called informed consent, but we are not being fully informed.
All
the facts are being hidden just as they were when CFS was invented to hide
"the awful truth" about Myalgic Encephalomyelitis. The name change advisory
board says that the acronym "ME/CFS" is a "medically correct" name to
replace
CFS, but it will still have a false CFS fatigue definition distorting
research, and the demeaning CFS will still be part of the name? How could
anyone believe this unimaginative hype that CFS will disappear when it is
clearly part of the acronym/name?
Don't be fooled again. If you rename this disease - again - and believe
that
the acronym ME/CFS is going to make CFS go away you may not like the
consequences. People will ask what does ME/CFS stand for and you will have
to
answer with nine words and then explain some more: Myalgic
Encephalomyelitis
or Myalgic Encephalopathy and Chronic Fatigue Syndrome. Three names for the
disease and you supposedly get to choose whether you call it
Encephalomyelitis
or Encephalopathy, its either one or the other. How does that clear up the
confusion? Whatever you "choose" you will still have to keep on saying the F
word, so it seems CFS is not going away.
Some argue that Myalgic Encephalomyelitis is a difficult name to pronounce,
but if you look in a medical textbook you will find many extraordinary and
complicated terms and that certainly is not a reason to reject the name of
this disease. If you can say polio-my-el-itis then you can say
encephalo-my-el-itis - a learning method that you get taught in your first
years at school.
The name affects everyone around the world so why is the decision to rename
the disease once again in the hands of a select group of Americans? Where
are
the international M.E. experts, particularly the ones who examined Myalgic
Encephalomyelitis patients long before the terrible CFS name change? What
about Ramsay's 1986 definition or Hyde's 2006 definition? What about the
WHO
classifying M.E. as a neurological disease way back in 1969? What about the
history of epidemics dating back to 1934? Sadly what about the autopsies?
Shouldn't we be discussing these terribly important facts?
Isn't it crucial to discuss the history of the epidemics and the knowledge
that Myalgic Encephalomyelitis is a very similar disease to Polio, that it
was
formerly called Atypical Poliomyelitis until they found that it was caused
by
other enteroviruses and not polio enteroviruses? Or that it is a very
similar
disease to Post-Polio Syndrome, a neurological disease placed correctly at
the
NINDS? Why isn't Myalgic Encephalomyelitis placed correctly at the NINDS?
No, the CDC prefers to call it CFS, states there are no tests or treatments
and hides it at the Office of Women's Health, adding further insult to all
the
males who suffer from M.E.
Multiple Sclerosis was called Hysterical Paralysis or Fakers Disease when
they
did not know how to diagnose it and M.S. sufferers were not believed just as
we are not believed, but in the 1950s a diagnostic test was found and the
original name, described by a famous physician Charcot in 1860 was restored,
and now everyone knows how serious this disease is. Most people think that
we
are faking it too when they hear CFS. It's almost the same story but the
major difference is that we had diagnostic tests including MRIs, viral and
immune tests, and M.E. experts saying it was Myalgic Encephalomyelitis back
in
the 80s. They knew what it was yet they ignored all the evidence, changed
it
to CFS and created a new definition.
This is the critical point - there was no need to change the name at all.
The scientific evidence for inflammation keeps mounting up and proving that
the original name was right, so why aren't we simply discussing going back
to
the historically and medically correct name? Don't you think it is time
that
all these questions and facts were discussed openly, and that patients and
M.E. experts from all over the world - not just a small group of American
experts - are rightly consulted about restoring Myalgic Encephalomyelitis
and
ensuring that the CDC acts fairly and places M.E. at the NINDS?
It is the only fair thing to do, in a "fair campaign".
What is going to help us the most, another confusing name change or the
truth
about Myalgic Encephalomyelitis, the diagnostic tests, the known viral and
toxin causation and the real possibility that researchers could have
discovered a treatment by now if they had adequate funding? If only we
hadn't
wasted the last 20 years on CFS and all those made-up fatigue definitions
and
the useless studies on fatigue. M.E. patients not only suffer severe
illness
and pain, they have been unnecessarily traumatised with disbelief, neglect,
abuse, poverty, isolation, loss of family and friends. This has to stop.
Please stop and think before you get caught up supporting this mess and then
you won't have to complain later on that another wrongful name change did
not
change anything at all and that the psyches are still getting paid millions
to
provide Character Breaking Treatment and Gratuitous Exercise Torture while
biomedical research is starved. Stop the madness! Speak up! Don't let
them
get another dollar that should go to urgently needed research and support!
John Anderson
Permission to repost

lable article:
"Toward an Empirical Case Definition of CFS" by Leonard A. Jason, Karina
Corradi, Susan Torres-Harding,
Journal of Social Service Research, Vol. 34, #2, pp 43-54, Winter 2007,
URL: http://jssr.haworthpress.com :
The field of 'CFS' studies needs to end.
The 'CFS Construct' is built on a house of cards, which is now falling....
Nothing significant can ever emerge when it is a 'syndrome' based on
'fatigue'.
Because fatigue is, after all, only a symptom - that presents with many,
many illnesses.
At some point in time, all theoretical ideas must become scientifically
supportable and reproducable.
And that requires carefuly planned and coordinated and implemented LARGE
studies.
'CFS' (Fukuda, et al) remains a 'diagnosis of exclusion'.
This is really scraping the bottom of the barrel.
'ME' is not a 'diagnosis of exclusion'. Nor is it classified under
'ill-defined', as 'CFS' is.
Instead it is correctly classified by the WHO under G93.3, Neurogenic (which
means it starts in the brain).
--
and health within HOURS.
It does not come on slowly over time; nor is it vague.
There is no comparison between the 'CFS' and ME.
Or at least there never was, until the 2003 ME/CFS 'blend' was written!
And how it's 11 authors justified that occurence remains confusing....
Where a person is in the disease process is also crucial: for instance, the
beginning years of ME are quite different from the later years.
--
timelines, adverse effects, illnesses, exposures, vaccinations,
surgeries, when and how symptoms started and persist, and more. No
authoritative diagnosis can ever be made without one!
--
patient.
I have conferred with countless patients over the past 6 years of serious
advocacy, who have never had these things done!
Self-reporting of symptoms and self-diagnosis can be tolerated no longer.
--
become near impossible in most locations globally, due to the infiltration
and inundation of the Wessely School's and USA CDC's made-up products over
the past 20 years (i.e., the 'CFS/ME' psychosocial illnesss MODEL, and the
'CFS Construct').
This is the most important and telling statement to note, in this article:
"The study's primary finding was that the symptom cluster as defined by the
Fukuda et al. (1994) criteria did not result in interpretable factors,
whereas, when using a larger group of theoretically defined symptoms, an
interpretable set of factors did emerge."
Far more discernable and scientific studies are needed. No where in the USA
is ME, G93.3, ever mentioned, let alone studied. This is an absolute
outrage!!!! Those of us who have it have paid a very heavy price indeed,
these past 20 years, while the governemnt and insurance cohorts play their
deadly and nonsensical games.
Ask yourselves this:
WHO HAS PROFITED???
WHO HAS BEEN HELPED???
Are any of you in a better place now, due to their efforts? No, I didn't
think so.
I am dedicating whatever time I have left to UNdo this tragedy, in the best
ways I know how. My efforts are hugely limited by my levels of debility now.
But I cannot, in good conscience, sit by and allow it to continue. My life
has too much value. Surely yours do, too?
LK Woodruff
lkw777@...

BREAKING A SILENCE.
By
Gurli Bagnall
³You only have power over people as long as you
don¹t take everything away from them.
But when you¹ve robbed a man of everything, he¹s no longer
in your power - he¹s free again.²
Alexander Solzhenistyn
26 January, 2008
The subject of Dr. Rosamind Vallings¹ recent award has been in the headlines
lately and no doubt she has helped many suffering from chronic fatigue or
chronic fatigue syndrome as found in mental disorders.
Her own preference for the use of the terms CFS and ³encephalopathy²
suggests that this is so. Myalgic encephalomyelitis, categorized by the
WHO as a neurological disease, is another matter entirely.
In the UK since the mid to late 1980s, the title of the condition went from
ME to CFS to CF to CFS/ME and ME/CFS. No wonder people are confused. In
this instance, confusion serves those who create it and the pharmaceutical
industry well. Dr. John Greensmith commented that: ³The next sleight is to
make M.E. disappear altogether by referring only to CFSS..²
To say: ³I suffer ME - not CFS!² is difficult when relying upon the
signature of an antagonistic doctor for the very right to exist. But
unless we do, we will continue to suffer and die in this hell on earth that
has quite deliberately, been created for us.
On 21 January, 2008, Marc-Alexander Fluk drew our attention to yet another
article published (this time) in the Eastern Courier on 16 January, 2008.
http://www.stuff.co.nz/stuff/sundaystartimes/auckland/4357227a6497.html
<http://www.stuff.co.nz/stuff/sundaystartimes/auckland/4357227a6497.html
It leaves little doubt about the area in which Dr. Vallings works.
³An interest in helping those with chronic fatigue syndrome has been a
decades-long passion for Rosamund VallingsS Her interest in chronic fatigue
syndrome/myalgic encephalopathy started in the 1970s S..² [During Dr.
Vallings time as medical adviser to the Associated New Zealand Myalgic
Encephalomyelitis Society, the name changed to the Associated New Zealand
Myalgic Encephalopathy Society. This denies the scientific findings of
inflammation of the brain and spinal cord in ME. Myalgic Encephalomyelitis
has an official neurological classification under the WHO International
Classification of Diseases; on the other hand, myalgic encephalopathy has
no classification at all leaving the field wide open to psychiatric
maneuvering.]
³A lot of research being done is leading to exciting new approaches to
treatment, she saysS² [The only ³exciting² research that has been on the UK
government¹s agenda for many years, revolves around cognitive behavioural
therapy, graduated exercise therapy and psychotropic drugs all of which are
psychiatric treatments. In regard to the latter, more and more doctors are
speaking out about the dangers to which patients under this regime are
subjected. A brief overview can be seen on:
http://youtube.com/watch?v=U2Sd73DQ2J0 ]
While still a member of ANZMES, I became concerned not only about the
information supplied, but also the source of that information. It was
presented in a patronizing manner - in kindergarten terms - and was
not helpful to those suffering ME.
On inquiring, I found that much of the material came directly from one of
the major charities in the UK - a charity that has been the centre of
considerable controversy for a number of years because of its leaning
towards the psychiatric model.
Professor John Campbell Murdoch, ex University of Otago, took over a
practice in a small country town here in NZ a few years ago. His particular
interest is in ME and he is known in international circles for his work in
that field.
In 2005, he commented on TV1 that victims of ME in New Zealand tended to go
underground. They rely as far as possible he said, on alternative therapies
rather than medically prescribed treatments. The interviewer responded
that this was surely an indictment against his profession and Professor
Murdoch did not disagree.
Clearly I was not the only person who had resigned her membership with
ANZMES,
At an international level, most of us face the same medical prejudices and
attitudes. Practical help with such things as hospital beds and other
equipment, housework and shopping, can be obtained here in New Zealand,
but sometimes only at a very high personal cost. The applicant often faces
a long bitter battle to obtain the help that is legally his/hers.
When applying for a hospital bed in earlier years, the Accident Compensation
Corporation asked someone they described as a CFS specialist to assess my
need. A number of recommendations were made and apart from drugs I had
already tried and reacted badly to, those that stay firmly etched in my mind
are the following: (1) The treadmill and temperature test - presented to
me as a definite diagnostic tool. If there was a drop in temperature during
an energetic ten minute session, then ME was present. (2) A referral to
the pain clinic where experimental exercise (running up and down a long
passage) was being carried out.
Where an anomaly had presented itself, e.g. low temperature, no mention was
made of it in the report. As for the bed, the specialist recommended that
the request be rejected on the grounds that it would encourage me to lounge
about.
This report was not written by a person who was knowledgeable and
sympathetic to the disease, Myalgic Encephalomyelitis. It highlighted the
current tendency to disregard the patient¹s complaints as subjective and
totally without merit never mind the truth. It also demonstrated a total
disregard for the medical history. I still have all the documentation
regarding these issues.
In other medical respects, negligence is a chargeable offence but when it
comes to ME, it is accepted as common practice.
As a matter of interest, the signature at the bottom of the ³specialist¹s²
report to the ACC, was R. Vallings.
Gurli Bagnall
URSULA@...
26 January, 2008

This is a slightly longer more in-depth version of this piece I'm sending at
the request of the author (Gurli Bagnall).
It'll be available soon on my site at:
http://www.ahummingbirdsguide.com/wbagnall.htm
Best wishes,
Jodi
ps. Please repost, but with this top bit omitted!
-------
BREAKING THE SILENCE.
By
Gurli Bagnall
³You only have power over people as long as you
don¹t take everything away from them.
But when you¹ve robbed a man of everything, he¹s no longer
in your power - he¹s free again.²
Alexander Solzhenistyn
26 January, 2008
The subject of Dr. Rosamind Vallings¹ recent award has been in the
headlines lately and no doubt she has helped many suffering from chronic
fatigue or chronic fatigue syndrome as found in mental disorders.
Her own preference for the use of the terms CFS and ³encephalopathy²
suggests that this is so. Myalgic encephalomyelitis, categorized by the
WHO as a neurological disease, is another matter entirely.
In the UK since the mid to late 1980s, the title of the condition went from
ME to CFS to CF to CFS/ME and ME/CFS. No wonder people are confused. In
this instance, confusion serves those who create it and the pharmaceutical
industry well. Dr. John Greensmith commented that: ³The next sleight is to
make M.E. disappear altogether by referring only to CFSS..²
To say: ³I suffer ME - not CFS!² is difficult when relying upon the
signature of an antagonistic doctor for the very right to exist. But
unless we do, we will continue to suffer and die in this hell on earth that
has quite deliberately, been created for us.
On 21 January, 2008, Marc-Alexander Fluk drew our attention to yet another
article published (this time) in the Eastern Courier on 16 January, 2008.
http://www.stuff.co.nz/stuff/sundaystartimes/auckland/4357227a6497.html
<http://www.stuff.co.nz/stuff/sundaystartimes/auckland/4357227a6497.html
The following quotes are revealing: ³An interest in helping those with
chronic fatigue syndrome has been a decades-long passion for Rosamund
VallingsS Her interest in chronic fatigue syndrome/myalgic encephalopathy
started in the 1970s S..² [During Dr. Vallings time as medical adviser to
the Associated New Zealand Myalgic Encephalomyelitis Society, the name
changed to the Associated New Zealand Myalgic Encephalopathy Society.
This denies the scientific findings of inflammation of the brain and spinal
cord in M.E. Consider too, the fact that Myalgic Encephalomyelitis has an
official neurological classification under the WHO International
Classification of Diseases, while myalgic encephalopathy has no
classification at all leaving the field wide open to psychiatric
maneuvering.]
³A lot of research being done is leading to exciting new approaches to
treatment, she saysS² [The only ³exciting² research that has been on the UK
government¹s agenda for many years, revolves around psychiatric therapies:
cognitive behavioural therapy (CBT), graduated exercise therapy (GET) and
psychotropic drugs. In regard to the latter, complaints about the dangers
to which patients are subjected has sky-rocketed during the last couple of
years, and the number of doctors who have become whistleblowers has
increased dramatically. A brief overview can be seen on:
http://youtube.com/watch?v=U2Sd73DQ2J0 ]
It leaves little doubt about the area in which Dr. Vallings works. How
much of the precious funding available to ANZMES is being used on M.E. as
defined by the ICD, and how much is being wasted on conditions that do not
belong to this organization?
While still a member of ANZMES, I became concerned not only about the
quality of the information supplied, but also the source of that
information. It was presented in a patronizing manner - in kindergarten
terms - and was not helpful to those suffering ME.
On inquiring, I found that much of the material came directly from one of
the major charities in the UK - a charity that has been the centre of
considerable controversy for a number of years because of its leaning
towards the psychiatric model.
Professor John Campbell Murdoch, ex University of Otago, took over a
practice in a small country town here in NZ a few years ago. His particular
interest is in ME and he is known in international circles for his work in
that field.
In 2005, he commented on TV1 that victims of ME in New Zealand tended to go
underground. They rely as far as possible he said, on alternative therapies
rather than medically prescribed treatments. The interviewer responded
that this was surely an indictment against his profession and Professor
Murdoch did not disagree.
Clearly I was not the only person who had resigned her ANZMES membership.
At an international level, most of us face the same medical prejudices and
attitudes. Practical help with such things as hospital beds and other
equipment, housework and shopping, can be obtained here in New Zealand,
but sometimes only at a very high personal cost. The applicant often faces
a long bitter battle to obtain the help that is legally his/hers.
When applying for a hospital bed in the earlier years of my illness, the
Accident Compensation Corporation informed me that I was to be interviewed
by a CFS specialist who would assess my need for such equipment. On the
morning of the assessment, I received a copy of an internal memo; it had
been faxed to me anonymously from the local ACC office. It stated clearly
that the main object of the assessment was to find my condition (CFS)
greatly improved thereby giving the ACC the reason needed to ³disentitle
the claimant². It stated that a telephone conversation between a medical
adviser to the ACC and the ³specialist² indicated that she would be happy to
oblige.
The report resulting from the interview I had with this ³specialist², made
several recommendations which if acted upon, would have been injurious to my
health. Apart from drugs I had already tried and reacted badly to, the
following stays firmly etched in my mind:
(1) The blood test carried out by Dr. Les Simpson at the University of
Otago, while not a diagnostic test, showed typical features found in M.E.
The ³specialist² rejected it out of hand as worthless. (Later, Dr. Simpson
confirmed in writing that he still received specimens from her to test.)
(2) The "specialist" recommended a treadmill and temperature test presenting
it as a definite diagnostic tool. She claimed that ME was present if
there was a drop in temperature during an energetic ten minutes run on the
treadmill. (I already knew of someone who had been put through this. He
collapsed on the treadmill itself and suffered severe burns.)
I can only make a guess as to where this so-called test originated. The
Wessely stable springs to mind.
(3) The ³specialist² recommended a referral to the pain clinic which, at
that time, was trying experimental exercise (running up and down a long
passage) as a means of pain control.
(4) The ³specialist² took my temperature twice and it was low each time. No
mention of that was made in the report.
(5) As for the bed, the ³specialist² recommended that the request be
rejected on the grounds that it would encourage me to lounge about.
* This report was not written by a person who was knowledgeable about and
sympathetic to the disease, Myalgic Encephalomyelitis.
* It highlighted the common trend to disregard the patient¹s complaints as
subjective and totally without merit not to mention truth.
* It demonstrated a total disregard for the medical history.
* Most damning of all, it showed no concern for the harm it would have
inflicted upon me had I agreed to accept her ³expert² recommendations.
* I still have all the documentation - including signed letters from the
³specialist² herself - regarding this regrettable incident.
It is sad comment that in other medical situations, negligence is a
chargeable offence but when it comes to ME, it is accepted as common
practice.
Finally, and as a matter of interest, the signature at the bottom of the
³specialist¹s² report to the ACC, was R. Vallings.
Gurli Bagnall
URSULA@...
26 January, 2008

1/120/2007
TO: InvestinME:
Despite repeated and numerous requests by myself to many in the UK, I
have NEVER received a response to my question:
WHY are all of you so locked into the term/name 'ME/CFS' now????
~
The only thing in your current newsletter that actually refers to ME
is the Lost Voices section. And this quote from it says it all:
********************************************************************
"The name 'Lost Voices' refers both to the fact that people who are
severely ill with ME are generally not in a position to make
themselves heard, and also to the way that the prejudiced denial of
ME - as an 'aberrant belief' rather than a devastating physical
illness has meant that often others are incapable of actually hearing
and seeing what is being said and shown - our voices drop into a
void."
********************************************************************
You, as an organization, need to change your name to Invest in ME/CFS
now, as you no longer represent those of us with ME, G93.3,
Neurogenic.
~
You have jumped on the insidious 'ME/CFS' blended bandwagon along
with all of the others who claim to be working on relevant research.
What you are all chasing after--or claim to be working on--is
a 'blend' of two disparate things:
1) ME, AND
2) the made-up WS psychosocial illness MODEL (CFS/ME) ~OR~
3) the made-up 'syndrome' based on 'fatigue', called 'CFS'
(Fukuda, et al).
--
general 'symptom' and cannot be the basis of anything!!!!!
Folks, the status quo continues to be all smoke and mirrors. And
frankly, with so many conferences nowadays, no one is really doing
any useful or meaningful research.
Plus, research done on 'blended patient groups' will always and only
produce ~~mixed data~~, which is irrelevant and useless. So why
bother??
I am extremely disappointed in you. Many of us had such high hopes
for this group--and others--to stand up and speak out and to turn the
focus back on to the very debilitating and disabling ME. Instead you
have also sold your souls to the 'psychosocial' devils. Shame on you.
You may as well just sign my death certificate now.
LaVonne K Woodruff, USA
lkw777@...
I have severe ME, G93.3, Neurogenic.
*NOT CFS/ME (Wessely), ME/CFS (Canadian), CFS (Fukuda, et al), CFIDS
(CAA), Neuroimmune disorder, or any other made-up name/malady.
***********************Permission to repost************************

Hi I remember as a young person listening to Dr James Jones who is
from Colorado a