My blog

The 25% ME Group Press release finally went out this morning at 10am. I am
posting it
below unformatted. Please feel free to repost as long as it is unedited and in
its entirety.
Also please feel free to circulate it to local media with maybe a personal story
attached to
hang it on.
Best wishes
Hayley
FOR IMMEDIATE RELEASE
PRESS RELEASE
ME CHARITY CALLS FOR MRC TO STOP WASTING MONEY ON INAPPROPRIATE RESEARCH
A national ME charity representing severely affected ME patients today called
for the
Medical Research Council (MRC) to stop any further funding for psychological and
psychiatric research into ME (Myalgic Encephalomyelitis). The call is being made
by the
25% ME Group supported by The Countess of Mar and other ME organisations (see
below).
Simon Lawrence from the 25% ME Group said today "If the funding available for
cancer
research was all directed at how cancer patients think and feel about their
disease instead
of the physiology of the illness there would be an outcry.
For years the severely ill ME patients we represent have seen the MRC refuse
funding for
biomedical research whilst giving grants for psychological research. In the last
year alone
six studies designed to investigate the pathophysiology and epidemiology of ME
have all
been denied funding by the MRC. Yet the well funded PACE trial which many of the
ME
charities wanted to boycott has been granted an extension of funding. It is
totally
unacceptable that a hugely important study which is investigating gene
expression in ME
and which could lead to a diagnostic test, is being funded by patient-based
charities
whilst trials of psychological therapy are receiving millions of pounds in
funding from the
MRC."
Simon Lawrence pulls no punches when he says "Public money is being wasted on
research
that will be of little benefit and may actually be harmful to ME patients. It is
about time
serious money was spent on the pathology of this devastating illness."
The Countess of Mar, endorsed by Dr Ian Gibson MP, made the following comment,
"As a
member of the Inquiry led by Dr Ian Gibson MP, as well as Patron of the 25% ME
Group and
of a number of other ME charities, I have long been concerned about the
allocation of
taxpayers' money to fund psychosocial behavioural research whilst proposals for
biomedical research are rejected, ostensibly because they do not reach the high
standards
thought necessary by the peer reviewers. Over the last decade many millions of
pounds
have been squandered on research which has totally failed to find cause, relief
or cure for
this painful, demoralising and socially unaccepted physical illness. It is high
time that the
funding organisations recognise that they should now support some of the fine
research,
conducted with minimal private funding, that is pointing to the direction in
which, I am
convinced, solutions will be found."
The undersigned ME organisations call for public money to be directed towards
funding
biomedical research which is already producing significant findings and is the
only
research capable of leading to a treatment and cure for ME.
###
LIST OF SUPPORTERS
Countess of Mar
Dr Ian Gibson MP
The ME Association (MEA) www.meassociation.org.uk
BRAME Blue Ribbon for the Awareness of ME
CHROME Case History Research on ME
The Young ME Sufferers Trust www.tymestrust.org
Invest in ME www.investinme.org
Dr E Dowsett MB.ChB.Dip.Bact
Dr Nigel Speight Medical/Paediatric Advisor to ME charities
Professor Malcolm Hooper PhD.B.Pharm.C.Chem.MRIC
Northampton ME Support Group
ME Support Norfolk
ME Free for All.org
WMMEG (Consortium of West Midlands ME Groups) - Herefordshire ME/CFS/FMS Group,
Shropshire & Wrekin ME Support Group (MESG), Solihull & South Birmingham MESG,
Warwickshire Network for ME, and Worcestershire MESG
Hampshire Friends with M.E.
Eastleigh & Winchester MESG
Reading Area MESG
SWAME (South West Alliance for ME) alliance of local MESGs across Devon,
Cornwall and
part of Somerset.
MEEK (ME East Kilbride)
MEET (Peterborough M.E. & CFS Self-Help Group)
Guildford MESG
Suffolk Youth & Parent ME Support Group
East Anglia ME Patient's Partnership
Doris Jones MSc Independent Researcher
Margaret Williams ME Advocate
Maidstone MESG
25% ME Group
www.25megroup.org
21 Church Street, Troon
Ayrshire, KA10 6HT
Tel 01292 318611
CONTACTS FOR MEDIA
Simon Lawrence 25% ME Group 01292 318611
Hayley Klinger 25% ME Group Media Relations hayley@...
Countess of Mar Tel: 020 72198627; email: marm@...
TYMES Trust Children's Charity. Jane Colby 01277 840527 and 07941 293357.
Notes for journalists
ME is classified by the World Health Organisation (WHO) as a neurological
illness alongside
motor neurone disease and MS, and the UK government officially acknowledges
this.
It is estimated that 25,000 children and between 100,000 and 300,000 adults
suffer from
ME in Britain. The condition had cost the taxpayer about 4 billion up to 2004
(2004
Hansard Tony Wright MP) http://www.publications.parliament.uk/pa/cm200304/
cmhansrd/vo040511/debtext/40511-58.htm
The 25%ME Group is a unique charity representing the interests of those 25% of
ME
sufferers who are severely affected rather than the wider ME community already
represented by The ME Association and other UK based ME charities. This means
many of
our members are so ill that they are totally bedridden, some are wholly
dependent on
carers for the basic functions of daily living and others are lucky enough to be
able to
leave home in a wheelchair occasionally.
Around the world a vast amount of research demonstrates immune system
dysregulation,
neurological problems, vascular and cardiac abnormalities as well as endocrine
and
digestive problems in this multi-organ, multi-system, devastating illness. For
an overview
see http://www.ahummingbirdsguide.com/researchgeneral.htm
Dr Daniel Peterson a leading ME specialist in the US says: "it is one of the
most disabling
diseases that I care for, far exceeding HIV disease except for the terminal
stages".
For info on the gene expression study based at the University of London see here
http://
www.meresearch.org.uk/research/projects/genesig.html
The preliminary findings suggest dysregulation of genes involved in immune
pathways,
supporting the many reports in the literature of immune dysregulation in the
pathogenesis
of ME/CFS.

PERMISSION TO REPOST
In recent days I have been among the unfortunate many to read a
piece entitled 'Fairness in Advocacy' by Cort Johnson (distributed
by the Co-Cure list), in which, to summarise briefly, advocates are
generally castigated for daring to make criticism of scientists, and
others in power, within the world of ME/CFS. The article is
extremely troubling and demoralising, erroneous and in many places,
preposterous. It is patronising and offensive in language to
sufferers and their advocates, written in broad sweeping generalised
claims devoid of supporting evidence, and makes Johnson appear as an
apologist for the psychiatric paradigm of ME/CFS and its proponents,
using classic, often-seen tactics of constructing sufferers and
their supporters as unreasonable and irrational.
The claims made in his piece about both stress and mood disorders
are based on poor science - unreliable research populations and
biased measuring devices as regards mood and mood disorders: the
confused notions and unverified claims doing the rounds
around 'stress' and its effects on the body: deliberate avoidance
of evidence contradicting those notions: deliberate avoidance of
evidence showing serious physiological abnormality per se: and a
determined colonisation of the illness known as ME/CFS and its
sufferers, by a psychiatric lobby in thrall to its own ideologies,
determined to make the discredited notion of 'hysteria' and its
illegitimate, wild child descendents respectable again (no matter
what the devastating cost to sufferers, it would appear).
The frequent, holier -than -thou attacks on people for daring to
make justified criticism of poor science occurs with monotonous
regularity, is quite frankly unfair, and this sort of thing
inevitably rankles people. But then, we often find pious circular
logic being used to claim that those of us objecting to such attacks
actually prove the point made by those such as Johnson. We've seen
this many times, and I've already seen this phenomenon with regard
to Johnson's piece. This has the effect of silencing dissent. After
all, who wants to be constructed as angry and unreasonable,
especially those for whom such constructions are almost an
occupational hazard, and for whom the risks of such constructions
are potentially catastrophic?
Meanwhile, sufferers continue to suffer devastation to life chances
and quality of life, often beyond repair. They continue to suffer
social and material inequalities, including social exclusion,
contempt from families, communities, doctors. They suffer agonising
pain and other distressing physical abnormalities, and their
suffering goes ignored, or they are blamed for bringing the
suffering on themselves- the authors of their own misfortune.
As a supporter of the ME/CFS community, this particular dragon has
decided to stick her head out above the parapet and say Johnson's
article is dogged by the author's own personal ideological
preoccupations, and does not reflect the true state of affairs as
faced by ME/CFS sufferers and those with associated conditions.
Indeed, I would go as far as to say that `Fairness in Advocacy' was
probably about the worst name anyone could have come up with for
such a piece.
Angela Kennedy

Hi, All!
'Routine jabs to protect woman against cervical cancer could be given to
girls as young as 12 from next year...
'Norwich North MP Dr Ian Gibson, who has pressed the government for many
years for such a move, last night hailed the decision as "a great victory
for women's health."...
'Dr Gibson said: "I think the issue of some suggesting that this will
increase promiscuity is pure nonsense. This will protect women and save
lives. No woman should die of cervical cancer these days but far too many
still do. It gladdens me to know this will be available."'
Only to be expected when the GSRME Report says, "Vaccination is often
blamed for unexplained outbreaks of illness and regularly appears in the
media being accused of such..."
Problems (like a few deaths already) with Gardasil?
Nah...
BW
John

*permission to repost* *permission to repost* *permission to repost*
*permission to repost* *permission to repost*
Reference:
*Fairness in Advocacy* by Cort Johnson
Help ME Circle, 18 June 2007
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0706c&L=co-cure&T=0&P=7819
M.E. advocacy and 'CFS' advocacy are not the same
Jodi Bassett, June 2007
The terminology of ME and 'CFS' (and CFS/ME, ME/CFS, CFIDS and ME'opathy) is
a minefield for the uninitiated.
Many of the worst articles on fatigue sufferers incorrectly claim that ME is
just another name for CFS, and although the vast majority of 'CFS' research
is utterly irrelevent to ME, some of the best research into ME has
unfortunately been done under the term CFS.
Even worse, more and more made-up terms such as 'CFS/ME' and 'ME/CFS' and
ME'opathy etc. are being used to refer to patients with psychiatric fatigue,
non-pyschiatric fatigue, post viral fatigue syndromes and just about any
other patient group (or combination of patient groups) that can be
misdiagnosed as 'CFS' as well as ME patients.
The terminology of ME and CFS has become very muddied (as was no doubt the
intention by those vested interest groups who worked to create it!).
But what is very clear is that the DEFINITIONS of ME and CFS are very very
different.
ME (as per the historical records of the outbreaks of ME, the work by
Ramsay, Richardson, Dowsett and Hyde and so on, and the WHO ICD) is a
distinct neurological illness which occurs in epidemic and sporadic forms,
is linked with Polio, and associated with many different abnormalities
visible on testing (abnormal MRI and SPECT scans of the brain, abnormal
responses to tilt table testing, abnormal exercise testing, reduced
circulating blood volume, low natural killer cells and low cytotoxitity of
NK cells, and so on.)
CFS, in contrast (according to each of the most popular CFS definitions;
Fukuda, Oxford and Australian) is not a distinct neurological disease, nor
any type of distinct disease at all. The definitions of CFS describe a
syndrome that does not exist; a mere diagnosis of exclusion or a wastebasket
diagnosis. The fact that a person qualifies for a diagnosis of 'CFS' (based
on any of the CFS definitions) is meaningless. It does not mean a person has
ME, nor any distinct disease named 'CFS.'
For more on this see:
http://www.ahummingbirdsguide.com/misdiagnosis.htm
Anyone who claims to be an advocate for ME patients MUST use the terminology
correctly, and make the appropriate distinction bwteeen the definitions of
ME and CFS, far more importantly. Without exception.
It is not helpful (or logical or ethical) to claim that you are advocating
for people with ME if you use only the terminology of "CFS' and readily
accept that any science whatsoever relating to people suffering 'fatigue' or
who qualify for a CFS misdiagnosis - no matter how flawed and no matter how
much additional harm and abuse it will cause to people with aunthentic ME -
is relevant in some way to people who actually have ME.
The CDC's latest research (including their enormous new prevalnce figures)
does not involve ME patients in ANY WAY. It is not ME which is being
studied, nor is it patients with ME that have been counted. The fact there
are four million people with mild tiredness is no more relevant to ME
sufferers than to people with MS, Lyme disease, or anything else. These
facts are abundantly clear to anyone familiar with even the basics of ME, or
should be.
This CDC research does not involve an infectious neuological disease that
may be tested for using a veriety of objective tests. In contrast to ME,
there are no tests for the illness the CDC calls 'CFS' (and of course there
never will be as 'CFS' is not a distinct disease but merely a man-made
disease category containing a ragbag of patients with many different
unrelated illnesses).
ME is defined by acute and testable changes to the brain caused by a virus
(most likely an enterovirus). CFS is defined by gradual onset, medically
unexplained 'fatigue' and an absense of positive test results. (If a patient
has serious abnormalities on testing, they no longer qualify as having
'CFS')
Patient advocates must decide who they are supposedly representing. It has
to STOP that so many groups and individuals are being allowed to have it
both ways, that is why people with ME are still subject to so much abuse and
neglect.... and NOTHING is changing for the better! People who mix together
ME and CFS help NOBODY... except maybe themselves...
If you want to advocate for ME sufferers, that's great! Make sure you
distinguish between ME and CFS in terminology, definitions, and history and
you'll be doing good work in no time! It's not that hard, really it isn't,
all you need to do is just a little reading.
However, if you want to support the work the CDC (and others) are doing into
heterogenous groups of fatigue sufferers (some of whom are ill due to
psychological disorders and some who are not) who are linked only by the
bogus disease cetegory of "CFS', that's fine too. (Although you wont really
be helping any patient group.)
But you cannot do this and ALSO claim to be an advocate for people with
aunthentic neurological Myalgic Encephalomyelitis (the same illness that
caused the Lake Tahoe outbreak). These two things are MUTUALLY EXCLUSIVE!
(You also cannot do this and include research into authentic ME patients
into the mix! As if the facts of ME were in any way relevant to
miscellaneous fatigue sufferers etc.)
ME and CFS are NOT THE SAME. Groups and individuals must stop claiming to
adocate for both groups and using terms like CFS, ME/CFS, CFS/ME and so on,
when in reality the information they produce is not relevant and specific to
ME at all. (ME is NOT a subgroup of 'CFS' , nor do patients with post viral
fatigue syndromes caused by Q fever, glandular fever/mono etc. have ME. ME
is an entirely different illness.)
People with ME also need to stop supporting ANY of these groups and
individuals which continue to mix ME and CFS together and act as if they
were one and the same. We have to demand more of them NOW! This has to
happen if we are ever to get anywhere... if so many people with ME are going
to STOP the abuse and neglect they live with every day...if we are to stop
the needless deaths... How 'fair' is all this abuse?
For more information see:
http://www.ahummingbirdsguide.com/misdiagnosis.htm
http://www.ahummingbirdsguide.com/testingforme.htm
http://www.ahummingbirdsguide.com/fatigueschmatigue.htm
http://www.ahummingbirdsguide.com/cbtandget.htm#92151527
A final note 1: These comments about separating out ME and CFS are made also
for the benefit of everyone misdiagnosed with CFS who does not have ME.
These patients all deserve a correct diagnosis finally too, and correct
treatment - which is denied to so many people because of the creation of
'CFS' in the 1980s. Enough people have DIED needlessly because of the
misdiagnosis of CFS too.... This isn't about who is the sickest - that is
irrelevant - the point is not that ME is more severe than 'CFS' but that
there is no such disease as CFS! EVERY DIAGNOSIS OF CFS IS A MISDIAGNOSIS.
A final note 2: The CDC are the actual reason CFS exists and that so many
patients have undergone so much immense suffering and abuse, or died.
Supporting the CDC.... is supporting our abusers and a sure way to ensure
the abuse continues for people with ME and everyone with non-ME illnesses
misdiagnosed as CFS..
For more information see:
http://www.ahummingbirdsguide.com/topicactivismthecdc.htm
In the words of Hillary Johnson (who I hope wont mind being quoted again by
me), author of Osler's Web:
'Reeves should have been sent to jail in the mid-1990s. The CDC shouldn't
even be involved in M.E.; after the profoundly botched (nefarious?) Tahoe
"investigation" of 1986-87, the Secretary of Health should have banned the
agency from further activity in the field and fired the scientists involved.
(In a rational world.) I'm tired of saying this. I really am. PWMEs who
think it's reasonable, at this late date, to try to negotiate for help with
this agency or any other agency or person employed in the DHHS are complicit
in their own demise and threaten every other PWME, as well, by propping up
the status quo.'
I think that says it all. As a fellow advocate said to me recently, if you
aren't mad and untrusting of the CDC, you aren't aware of the facts.
Preaching passivity will get us nowhere, only ensure the abuse continues.
(Please excuse any typing or grammatical errors, I'm not at my best
cognitively at present but felt compelled to comment, FWIW)
Best wishes,
Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
Do not for one minute believe that CFS is simply another name for Myalgic
Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease
process. It is (a) a partial mix of infectious mononucleosis /glandular
fever, (b) a mix of some of the least important aspects of M.E. and (c) what
amounts to a possibly unintended psychiatric slant to an epidemic and
endemic disease process of major importance. Dr Byron Hyde MD 2006

GO LK!!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
Lynn Michell summarises what the M.E. patients she interviewed for her
recent book, said about the illness: "It is as if someone has frayed the
ends of every nerve in the body and left them raw and exposed. It brings an
overwhelming need to close down sensory input and, for many, to retreat
from everyday ordinary stressors - conversation, noise, light, movement, TV
- since they are agonising to deal with. Everyone said that they were not
fatigued." (p.24) --

Nice one Haylay!!!!!!!!
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
I've lost count of the times medical staff have said to me: "I don't really
know very much about M.E. You get tired a lot, don't you?" No. I'm 35 and
haven't been "tired" in the conventional sense of the word since I was a
teenager. As anyone with severe M.E. will tell you, it has nothing to do
with being tired and everything to do with being physically ill. On the
many occasions I am unable to watch TV or hold a conversation, sit upright
or walk more than a few steps, it is not because I am "tired". Trust me,
"fatigue" or "tiredness" don't even register on the scale of how
life-shattering an illness this can be. Tiredness is to M.E. what
forgetfulness is to Alzheimer's disease. Sick, Not Tired by Ciara
MacLaverty --

The 25% ME Group are planning to issue a press release - see below:
ME charity calls for an end to MRC funding for psychological and psychiatric
research into
ME.
A national charity representing severely affected ME patients today called for
the MRC to
stop completely any funding for research into ME that is not biomedical in
nature.
Simon Lawrence from the 25% ME Group said today "If the funding available for
cancer
research was going towards researching the personality of patients rather than
looking at
the physiology of the illness there would be an outcry. For years the severely
ill ME
patients we represent have had to put up with the MRC refusing funding for
biomedical
research whilst it gives money to psychological research. In the last year
alone six studies
looking into pathophysiology and epidemiology of ME have all been turned down by
the
MRC whilst the well funded PACE trial which many of the ME charities wanted to
boycott
has been granted an extension of funding. It is totally unacceptable that a
hugely
important study looking at gene expression in ME and which could lead to a
diagnostic
test, is being funded by patient groups whilst trials of psychological therapy
are receiving
millions of pounds."
Simon Lawrence pulls no punches when he says "Public money is being wasted on
research
that will be of no help to ME patients. It is about time serious money was spent
on
research into the pathology not the psychology of this devastating illness and
high time
that psychiatrists retreated to their own field of mental health and left ME
well alone".
Background
ME is recognised by the world health organisation as a neurological illness
alongside
motor neurone disease and MS, yet even though the government officially
acknowledges
this, the bias of research has been towards explaining the illness from a
psychological
perspective. Around the world a vast amount of research demonstrates immune
system
dysregulation, neurological problems, vascular and cardiac abnormalities as
well as
endocrine and digestive problems in this multi-system, devastating illness. Dr
Daniel
Peterson a leading ME specialist " it is one of the most disabling diseases that
I care for,
far exceeding HIV disease except for the terminal stages".

Hi, All!
Due to some hitherto unexplained glitch, I was recently unable to either

From: Suzy Chapman & Ciaran Farrell
me.agenda@...
ciaran@...
20 May 2007
May be reposted
The Group on Scientific Research into ME (the "Gibson Group") has already been
disbanded.
On Friday 18 May, two documents were sent to us by Sarah Vero on the
understanding that this material was not released until it had been posted by
the webmaster on the official GSRME website. We can now release copies of both
these important documents: 1] Statement from the GSRME and 2] Notes following
the final meeting of the GSRME held on 8 May 2007 [copies of both items are
appended at the end of this commentary].
In her accompanying email, Ms Vero advises us that although five members of the
GSRME had been open to discussing limited amendments to the Gibson Report (and
that it had been intended that the APPG would be deployed as a focus group
through which consensus over amendments would be sought) that since the rest of
the panel had already quit the group, amendments were no longer an option.
With regard to the now suspended EDM, which Dr Gibson had proposed to put down a
few weeks ago, Ms Vero advised us that it has been mooted on behalf of the
Gibson Office that the focus of the EDM should shift to the APPG and that an
alternative EDM might at some point be drawn up through and under the auspices
of the APPG. We are told that Dr Charles Shepherd has suggested that an EDM
might be resurrected later in the year but focussed, this time, on the NICE
guidelines - a concept which Ms Vero considers might offer an "interesting
solution".
An EDM focussing on the NICE guidelines later in the year, when the finalised
Guidelines are due to be published in August, smacks to us of shutting the
stable door long after the horse has already bolted. According to Dr Shepherd,
"a team from NICE have accepted an invitation from the MEA to take part in a
public meeting on this guidance following publication in August" - again we
question the value and purpose of this exercise. The draft of the NICE
guidelines were released last October - perhaps the time to have launched an EDM
calling for their withdrawal (with associated media work) would have been then -
not after the document has been finalised and published.
Is the APPG/MEA considering launching a similar campaign to that of the
cross-party group on MSBP (FII) but calling for the withdrawal of the NICE
Guidelines? Could not the GSRME have leant its high profile membership behind a
call for their withdrawal, last November? Perhaps such a positive move by this
group, in the wake of the publication of its Report, would have proved
newsworthy?
We would like to draw your attention to the fact that the GSRME did not meet as
a panel after the public meeting on 6 February until its dissolution meeting of
8 May. This means that any proposed EDM which was supposed to have originated
out of the 6 February public meeting must have been discussed informally outside
the framework of the panel's meetings under the auspices of Chair's Action taken
by GSRME Chair, Dr Ian Gibson. This confirms our postulate that there could not
have been any official committee based consultation processes or procedures
initiated by the GSRME panel in relation to the EDM. This further confirms that
the production of the EDM was carried out through liaison between Dr Gibson and
Charles Shepherd of the ME Association, and that the second version of the EDM
was an amendment to the earlier version as a result of this liaison.
This in turn confirms that the GSRME Chair and Charles Shepherd of the MEA
essentially cut a deal between them on the content and wording of the EDM and
also conspired to marginalise and therefore disenfranchise the ME community from
being able to participate in any form of consultation process over what this EDM
should call for, because their priority was to campaign upon an EDM which they
had agreed on between themselves.
Only one MP appears to have attended the APPG meeting last Thursday - the Chair,
Dr Des Turner, so the meeting was inquorate and attracted one of the lowest
turnouts by MPs for some time. Dr Ian Gibson had put himself forward as
Secretary to the APPG on ME at its rescheduled AGM, last November, but since
that meeting Dr Gibson has failed to attend a single APPG, in person, sending
his researcher along, instead. We hope that Dr Gibson is giving his fellow MPs
adequate notice of APPG meetings even if he is otherwise too busy to attend
these meetings, himself.
The next APPG meeting, scheduled for July, will also be the group's AGM; we
trust that Dr Gibson will try and make it to this important meeting and that he
will also encourage his colleagues to attend. We would not like to see a repeat
of last year's AGM which failed to make a quorum and had to be held again and
which was marred by other constitutional issues.
We see from the "Notes" following this meeting of dissolution of the GSRME that
the Department of Health has still not responded to the Report and neither have
the Ministers of other departments or other officials, like those of the MRC,
made any responses. This serves to reinforce the fact that the "Gibson Report"
was an unofficial document published by an unofficial group and that the
"Inquiry" and the (still flawed) Report which this now dissolved group has
produced had no status whatsoever within parliament, despite the efforts of some
organisations and individuals to spin the status of this document and to promote
this project as having been a "Parliamentary Inquiry".
We are disappointed that Baroness Cumberlege, Lord Turnberg and David Taylor, MP
have not stayed the course long enough to enable the group to agree on and carry
out (what would have been limited) amendments to the Report. The GSRME "owns"
the Report but the GSRME has now disbanded; the factual inaccuracies, damaging
ambiguities, contradictions and misconceptions which litter this Report will now
remain uncorrected. We have done what we could to push for amendments, although
we would like to have seen the entire document undergo revision in order for it
to be rendered "fit for purpose".
No forward planning for the future role of this group and no exit strategy
appeared to have been formulated by Dr Gibson beyond the publication of the
group's Report and the public meeting. But then forward planning and strategy
have never been a hallmark of this project.
We've been following with much interest the work of John Hemming, MP with the
"Justice for Families" group which campaigns on behalf of families whose lives
have been ripped apart by social services and the Family Courts - some of whom
have had children and young people with ME/CFS taken into care. We've been
comparing the content of speeches made in the House of Commons by Mr Hemming on
behalf of this interest group, the media work he has done and the way in which
he works in partnership with this campaigning group, with the way in which Dr
Gibson has managed his GRSME project, with the public addresses he has given,
with the way in which he has repeatedly failed to consult with his constituency
of interest and with his recent appearance during this year's ME Awareness Week
on Radio Norfolk, in particular.
We consider this begs the question - was an unofficial "inquiry" the best way of
going about this? And if, following an adequate period of consultation, it was
felt to be the best vehicle to use as a campaigning tool, should not we, the ME
community, have been allowed to scope its remit and retain a stake in this
project's development?
Next time the ME community considers approaching a politician for their help
with ME campaigning let us hope that some careful research is done first. Dr
Gibson may enjoy "the challenge" of tackling "controversial issues" and
launching "inquiries" but we needed more than a "broad-backed politician"
struggling to keep on top of his brief and with no real strategies for how he
planned "to take things forward" with government departments and with policy
makers.
We would like to thank all of you who have called publicly for amendments or who
have written to the GSRME with your concerns about specific sections of the
Report, or the Report in general.

It's all fixed now, but I had to re-upload them. (There are now 2 videos up)
So... sorry but the links for each vid that worked a few days ago wont work
anymore as they have a different number now.
Probably just best to send this link (if you are emailling links of them to
people as I know some of you are):
http://www.youtube.com/profile?user=AHummingbirdsGuide
Apologies! I really only very barely knew how to make a video when I did the
first one, now I really have the hang of it, so this wont happen again!
(I thought it would be better to delete them now, while only a few people
had taken the time to rate them and send links out etc, rather than do it
later when disruption/inconvenience would be even worse.)
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
Peterson tried to convey the quality of the pervasive symptom, calling it
'absolutely striking - like nothing you have ever heard in taking histories
before. This isn't tiredness. This is a carpenter who says, "I can't raise
my arm to hammer," or a marathon runner who says, "I can't make it to the
corner." Hillary Johnson in 'Osler's Web' p 34
--

Hi, All!
"...One time benefit claimants are now seen as customers of providers and
public agencies, such as Jobcentre Plus..."
"...ministers are looking to bring more competition into welfare services.
The private and voluntary sectors can be vital sources of expertise in
dealing with as complex and fragmented an environment as welfare reform.
Their involvement will require a system of contracts and rewards, data and
information, and regulation and monitoring."
"Jobcentre Plus aims to move one million people off incapacity benefit and
into work by 2015. Jeremy Groombridge, JCP's director of transformation and
product management, outlined the initiatives and measures which the
government hopes will achieve that goal, which includes Pathways to
Work. This extends employment opportunities to people with health problems
and disabilities, and sees benefits claimants very much as customers."
"From 2008, Pathways to Work will be complemented by a new Employment
Support Allowance designed to promote work-focused support. The ESA mixes
compulsory work-focussed interviews with personalised action plans and
support, plus offers a weekly cash credit to claimants who earn less than
£15,000 in a new job."
http://www.carterandcartergroup.com/InsightNews/tabid/216/Default.aspx?newsid=18
6
Carter & Carter Group plc: "Carter & Carter sponsor Making Welfare Reform
Work" (24/04/2007)

Hi, All!
This should be of interest to any M.E. sufferer in receipt of Incapacity
Benefit. It is a letter from Jobcentre Plus (* = bold type).

http://www.youtube.com/watch?v=mhoEmO8GQM4
Is 4mb and goes for 3 minutes.
Was fun, and only took a few hours (I had help!)... as you can probably
tell! More to come over next few months. Slowly!
:)
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
It is a fact that the majority of M.E. patients are not in high-stress
occupations as the popular press frequently suggests, but are teachers,
nurses, physicians, and other health care workers. This group represents
those most closely related to infectious illness, frequent immunisations and
those most frequently immunised. The Clinical and Scientific Basis of
M.E.(CFS) Dr Byron Hyde p. 115
--

*permission to repost*
http://www.ahummingbirdsguide.com/whatmefeelslike.htm
A new paper is available: 'What it feels like to have Myalgic
Encephalomyelitis: A personal symptom list and description of M.E.' by Jodi
Bassett, May 2007
This paper combines the available research on M.E. with a personal
description of the illness to try to explain what it really feels like to
have M.E.
This is not just a second 'list' of symptoms - more than 50 individual
symptoms (and other characteristics) of M.E. have been described here in
detail. (This has been a very big project!)
M.E. is primarily neurological of course so many different neurological (and
cognitive) symptoms are described here including: seizures, stroke-like
episodes, paralysis, facial agnosia, intermittent 'flashes' of regained
consciousness, handwriting changes, inability to maintain consciousness,
absence seizures, low level seizures (or feeling 'wired'), black outs,
memory loss, forgetting how to speak/understand speech, forgetting how to do
simple tasks, difficulty speaking, difficulty with complex thought due to
the loss of working memory, forgetting how to walk (or do other simple
tasks) with distractions, forgetting basic facts and words, vertigo,
proprioception difficulties, the need for mental micro-rests, volitional
problems, sleep paralysis, and more.
(At least half of all the symptoms described are neurological or cognitive.)
Although M.E. is primarily neurological, symptoms are also manifested by
virtually all bodily systems in M.E. including: cardiac, cardiovascular,
immunological, endocrinological, respiratory, hormonal, gastrointestinal and
musculo-skeletal dysfunctions and damage.
Non-neurological symptoms described include: cardiac events, tachycardia, a
'fluttering' heart, flu-like symptoms, alcohol intolerance, food allergies
and sensitivities, problems with swallowing and choking, cold fevers,
problems with temperature regulation, inability to tolerate warm weather,
Raynaud's like symptoms, orthostatic symptoms, heart attack-like episodes,
joint stiffness, nausea, feeling poisoned, shortness of breath, headaches,
muscle weakness/twitching/paralysis, chemical and drug sensitivities,
sensitivity to touch, destruction of fingerprints, pain, and many more.
As everyone who has M.E. knows however, just looking at each of the
individual symptoms of Myalgic Encephalomyelitis only tells you half the
story about M.E. and what M.E. is like to live with. What characterises M.E.
every bit as much as the individual symptoms is the pattern of symptom
exacerbations, relapses and disease progression (and so on) in M.E. which
include:
a. When you have M.E. you very quickly find out that you are unable to be
anything like as active as you were pre-illness. This is an acute change,
not a gradual one; M.E. patients can only achieve 50%, or less, of their
pre-illness activity level immediately upon becoming ill with M.E.
b. As well as no longer being able to be as physically active as you were
pre-illness, you are also limited in a similar way with; cognitive exertion,
sensory input and orthostatic stress.
c. Being active beyond your individual (physical, cognitive, sensory or
orthostatic) limits causes a worsening of all sorts of different
neurological, cognitive, cardiac, cardiovascular, immunological,
endocrinological, respiratory, hormonal, muscular, gastrointestinal and
other symptoms.
d. 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.
e. The severity of M.E. waxes and wanes throughout the hour/day/week and
month. (Periods of intensive rest before events, and surges of adrenaline,
can also sometimes allow people with M.E. to do things beyond their usual
limits for a short time - albeit at the cost of future relapse and/or
disease progression.)
f. The worsening of the illness caused by overexertion can be acute, but
often does not peak until 24 - 48 hours (or more) afterward.
g. If you push past your individual limits too deeply or too often, the
effects of overexertion can also accumulate over longer periods of time and
lead to disease progression, or death.
h. The activity limits of M.E. are not short term (they are not being
perpetuated by 'deconditioning' - 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.)
i. 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.
j. Repeated overexertion can harm your chances for future improvement in
M.E. M.E. patients who are given advice to rest in the early stages of the
illness (and who avoid overexertion thereafter) have repeatedly been shown
to have the most positive long-term prognosis.
k. 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.
This paper is quite detailed, but a condensed (half as long) version is also
available, and as always, both may be downloaded in printer-friendly Word or
PDF formats.
See: http://www.ahummingbirdsguide.com/whatmefeelslike.htm
-----
If you would like to submit your own description of some of your symptoms
after reading this paper (or read descriptions written by other sufferers),
see this page for details:
http://www.ahummingbirdsguide.com/whatmefeelsliketome.htm
You could write about one particular symptom or several. You could comment
on how your cold fevers, noise or light sensitivity, food sensitivities,
cardiac episodes, memory problems, need for micro rests, sleep problems etc.
are different to mine, or the same or similar to mine, and so on. Anything
about the real constellation of symptoms of M.E.
(M.E. sufferers only please)
-----
Additional note:
This is not just a description of severe M.E.
I had almost all of these same symptoms (some of them severely) when I
'only' had moderate M.E. for the first 4 years of my illness, as well as
when my M.E. became severe and then very severe (due to overexertion). Of
course severe M.E. is even worse, but moderate M.E. can also cause severe
symptoms and a high level of disability. (Unfortunately.)
Best wishes everyone,
Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
'Ahh. they have the internet on computers now!' Homer J. Simpson.

MAY BE REPOSTED
In a bid to raise awareness of not only M.E. on 12 May but also the
existence of our local support group by distributing leaflets and
collecting signatures on our petition calling upon the UK government and
relevant bodies to adopt the 'Canadian Guidelines', "M.E. Support-Norfolk"
put out a press release (text below) to the various media in Norfolk on 4
May.
On Thursday 10 May I received a telephone call from (who I think was) the
producer of the Stephen Bumphrey show on Radio Norfolk, asking me to give
more detail about the contents of the press release (ie. what M.E. was, how
it affected people, what the main symptoms were, what the 'Canadian
Guidelines' were etc.).
She ended the conversation by mentioning that Ian Gibson would be on the
show between 7 and 8am the next morning.
I naturally took it for granted that mention would be made of M.E.
Awareness Day, taking place on 12 May, and that that was presumably the
reason for having Dr Gibson on the programme.
I wasn't able to be awake and functioning by 7am on Friday, but on Saturday
I managed to listen the first hour of Friday's programme on Radio Norfolk's
web site and was astonished by the pathetic lack of proper coverage of both
our efforts and M.E. Awareness Day itself. Not only was "M.E.
Support-Norfolk" not referred to by name but also no mention was made of
our contact number.
I have transcribed the relevant portion of the programme below. The extract
begins after a station ident.
Note that when asked to elaborate on the petition, instead of doing so, and
in true politician's fashion, Ian Gibson talks about something else instead
- ie. the GSRME inquiry.
Note also that when asked if he thinks the petition will make a difference,
IG says merely, "Yes I think there's been an awareness week of it" - and
proceeds to talk about the GSRME inquiry again!
But what disturbs me most of all is the blatantly misleading claim by IG
that the GSRME Report "came down very much on the biomedical side".
This is *not* the case, as can be seen from reading the GSRME Report, which
contains the comments:
"The Group was interested by the concept of a 'biopsychosocial' model of
illness as long as one aspect is not given particular prevalence over the
other, both approaches must be considered at the same time." (p12, 2.5.1)
"Psychosocial methods of treatment do have a role to play as the relation
between mind and body in disease is complex." (p24, 4.2)
"The most effective psychological therapy, which has been shown as such in
controlled clinical trials, is Cognitive Behaviour Therapy (CBT)." (p24,
4.3)
"Prof Trudie Chandler presented to the group on [Cognitive Behaviour
Therapy]. Prof Chandler's results were impressive. This treatment certainly
has a role to play in treating CFS/ME. Although in other illnesses this
treatment is provided as an adjunct to treatment for the organic disease,
in CFS/ME this, and GET...are the only available treatments which have been
shown to be effective in several controlled trials." (p24, 4.3)
and, most tellingly:
"It seems probable that, as with most other diseases, there is likely to be
a physical element and a psychological element to the illness...For some
doctors to deny the existence of a physical part of the illness is as
equally unhelpful as the claim by some patient groups that there is no
psychological element to the disease." (p26, 4.6)
In no way does this square with the claim that the GSRME "came down very
much on the biomedical side".
Lessons to be learned here.
John Sayer

upported by our CFS and CFIDS organizations?
The invention of the CFS term and its vague definitions have been a terrible
insult and injustice to the human rights of patients suffering systemic
medical neglect of the most debilitating epidemic disease currently sweeping
the planet. Now that awareness of the history preceding the imposition of
this damaging terminology has become well known around the world, the WHO
classified and scientifically confirmed disease Myalgic Encephalomyelitis
and its definitions remain the only legal and moral terminology acceptable.
The WHO ICD and the CDC must update the neurological classification of ME as
confirmed by the Ramsay, Canadian Consensus and Hyde definitions, and they
must remove Chronic Fatigue Syndrome from the same neurogenic category - CFS
by its various definitions is not a neurological condition nor a synonym for
ME. CFS is a diagnosis of exclusion and therefore it does not describe any
disease process, it is just a label for any undiagnosed condition presenting
with chronic fatigue as a symptom. All patients deserve a proper medical
diagnosis, not a CFS label and misguided psychiatric interventions that do
cause harm to those suffering from neurological ME.
The trivialising and insulting term CFS has resulted in the loss of 20 years
funding for thorough research and treatments - this funding has been wasted
on useless fatigue and behavioural studies and the distracting invention of
the biopsychosocial model and functional somatic syndromes, despite the 50
years of increasing scientific and genetic evidence for the serious
pathophysiology of Myalgic Encephalomyelitis. The correlation of outbreaks
of ME and Poliomyelitis that were documented from 1934 and which provide
important clues to the aetiology of the disease have also been negligently
overlooked.
The government needs to be reminded of its legal and constitutional
obligation to urgently fund biomedical research and education of the medical
community to uphold the rights of ME patients to be diagnosed and treated
with as much dignity as any other severely disabling neurological condition
is awarded. Further, any "fatigued" patient who does not fit the ME
diagnosis has the right to an accurate diagnosis and treatment of the
underlying medical condition that is currently being mislabelled as CFS.
There is no formal education of the medical community and doctors are so
misinformed, untrained and inexperienced that they cannot diagnose and treat
these severely ill patients in the mistaken belief that they suffer from
some unimportant fatiguing state they only know as CFS. Some patients have
lost their lives to ME because they were unable to find a doctor who
believed in them. So many of us struggle to find a doctor who knows
anything about this disease or how to treat it and we are left to manage
this disease ourselves. Where are our basic human rights here?
The information promoted by the CDC's CFS website, its PR marketing company
the CFIDS Association of America (CAA), and their CFS Awareness Campaign is
a huge disservice to all patients and researchers. They incorrectly state
that there are no diagnostic tests or treatments, there is no mention of ME
as the distinct neurological disease recognised since 1956 and classified by
the WHO since 1969, no justification for the invention of CFS to replace ME
in 1988, or serious investigation of the missed diagnosis of other
conditions hiding behind the obfuscation of CFS.
There is no mention of the internationally acclaimed Canadian Consensus
Guidelines, the Ramsay and Hyde definitions, or the documented epidemics
dating back to the 1934 Los Angeles outbreak - yes the first recorded
outbreak of ME occurred in America! The "evidence" is further skewed by the
flawed CDC genetic research which selectively supports "allostatic stress" -
while ignoring the neurological, immune, cardiac, mitochondrial dysfunction
and evidence of persistent viral infection found by Dr Jonathon Kerr's
genetic research published in the Journal of Clinical Pathology.
Changing the name to Myalgic Encephalopathy with a CFS based definition is
another unjustified and damaging name change. Current research presented as
recently as the 8th International IACFS/ME Conference supports the historic
name and definitions of Myalgic Encephalomyelitis with more evidence of CNS
inflammation, vasculitis and myelin damage. However "encephalopathy" can be
taken to mean "altered brain state" which together with a CFS based
definition will only compound the misconceptions and invite further
irresponsible psychiatric interventions that have damaged patients and taken
precious funding away from essential biomedical research.
And so it will get worse. The CDC will find a way to inflate the numbers of
fatigued people to fit their made-up definition of Chronic Fatigue Syndrome
under the name Myalgic Encephalopathy and the CAA will get more funding for
an even greater PR campaign. The CDC will then justify the need for even
more government funding for research into this alleged "allostatic stress
syndrome", which will only result in psychiatrists also benefiting
financially to do even more irrelevant fatigue and behavioural studies,
while ignoring the real suffering and growing death toll from Myalgic
Encephalomyelitis.
It is "all in their heads" if they believe that they can cure a neurological
disease with CBT and GET. It is very concerning that so much obvious
misinformation can be presented as fact. As a consequence I am beginning to
question whether the media hype about the potential "bird flu" epidemic is
nothing more than a fear tactic to cover the real ME pandemic that is
currently devastating millions of lives around the world. They are spending
billions of dollars stockpiling antiviral medications for something that may
never happen, and failing to provide antiviral and other treatments now for
those desperately suffering or dying from this debilitating disease.
It is also a concern that are there still so many CFS and CFIDS charities
perpetuating the misinformation and myths about CFS. Why do so many of
these organizations remain ignorant of the most critical and basic facts
which have damaged all of us for the last 20 years? If they do not know the
70 year history of Myalgic Encephalomyelitis and its epidemic association
with Poliomyelitis, and are not promoting Myalgic Encephalomyelitis and its
definitions, the longstanding WHO neurological classification, or declaring
the scientific evidence and diagnostic tests that do confirm the disease,
then who are they advocating for and how do they justify their existence?
There are genuine ME charities and some very dedicated researchers that
desperately need our support and deserve our gratitude for their tireless
efforts advocating for the recognition and scientific understanding of
Myalgic Encephalomyelitis. When will the government and the CFS/CFIDS
charities also act responsibly and ethically to fund and promote genuine
education, research and treatment of this disabling epidemic disease?
John Anderson
Permission to repost

*please repost*
The Australian youth TV show 'JTV' is doing a short story on M.E. (or
'ME/CFS' as they're calling it) to be aired on May 11th, 2007 at 11.30pm on
channel 2/ABC.
It will be a short (under 10 minute) segment, for the 'Hack' part of the
program, the current affairs part of the show.
Once the program has aired, you will also be able to download the show,
including the Hack section, as a vodcast. Links for this will be given on
the following webpage, after the show has aired:
http://abc.net.au/jtv/vodcast/
(Each vodcast will be around 80mb in size).
Fingers crosed for an overall positive contribution to M.E. activism!
(Although unfortunately the term 'ME/CFS' is being used, hopefully at least
some of the information included - provided by myself - will relate to M.E.
and just as importantly talk about the difference between M.E. and CFS, and
how all patient groups are harmed by the bogus 'CFS' construct and so on.
Again, fingers crossed!)
Best wishes,
Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
The invention of Chronic Fatigue Syndrome has to be one of the most curious
cases of inventive American scientific imperialism that one could imagine.
Dr Byron Hyde MD 2006
--

*permission to repost* *permission to repost* *permission to repost*
*permission to repost*
The myths about M.E. and the symptoms of M.E. written by Jodi Bassett, May
2007
Because of the vast amount of inaccurate information being propagated about
M.E. by various vested interest groups (helped immeasurably by the creation
of a number of vague umbrella terms such as 'CFS' 'ME/CFS' 'CFS/ME' 'CFIDS'
and Myalgic 'Encephalopathy' etc.) it is important to explain briefly what
are the myths about M.E., and the symptoms of M.E.
M.E. has nothing to do with being tired all the time. If you are very
fatigued for an extended period of time this does not mean you are having a
'bout' of M.E. To suggest such a thing is no less absurd than to say that
prolonged fatigue means you are having a 'bout' of multiple sclerosis,
Parkinson's disease or Lupus. If you are constantly fatigued you do not have
M.E. no matter how severe or prolonged your fatigue is. Fatigue is a symptom
of many different illnesses as well as a feature of normal everyday life -
but it is not a defining symptom of M.E., nor even an essential symptom of
M.E.
There are a number of post-viral fatigue states or fatigue syndromes which
may follow common infections such as mononucleosis/glandular fever,
hepatitis, Q fever, Ross river virus and so on. M.E. is an entirely
different condition to these self-limiting fatigue syndromes however, the
science is very clear on this point. People suffering with any of these
post-viral fatigue states or fatigue syndromes do not have M.E. M.E. is also
not the same condition as Lyme disease, athletes over-training syndrome,
burnout, depression, somatisation disorder, candida, multiple chemical
sensitivity syndrome or Fibromyalgia, or indeed any other illness. M.E. is a
distinct neurological illness with a distinct; onset, symptoms, aetiology,
pathology, response to treatment, long and short term prognosis - and World
Health Organization classification (G.93.3).
M.E. is also not defined by 'fatigue following exertion which can last up to
24 hours' as the bogus definitions of 'CFS' describe. Fatigue following
activity (or post-exertional fatigue or malaise) is a common symptom of a
large number of different illnesses - but what is happening in M.E. is quite
different. Overexertion does not cause fatigue in M.E. but instead a
worsening of the severity of the illness generally and of various
neurological, cognitive, cardiac, cardiovascular, immunological, muscular
and gastrointestinal (and other) symptoms. The severity of these symptoms
can range from mild to severe to life-threatening. The effects of
overexertion can last for hours, days, weeks or even many months in M.E., or
can even be permanent. The onset of these post-exertional effects can be
significantly delayed so that very often the worsening of the illness caused
by overexertion has not even begun within 24 hours in M.E., let alone been
completely resolved in that time. The reaction people with M.E. have to
physical and mental activity, sensory input and orthostatic stress not only
has nothing to do with mere fatigue (or 'malaise') but is in fact unique to
M.E. in a number of ways.
This reaction is so abnormal in fact that exercise testing is one of the
series of tests which can be used to help confirm a M.E. diagnosis, as are
various tests which measure the abnormal responses to orthostatic stress
seen in M.E. This is simply not the case in post-viral fatigue syndromes,
Lyme disease, Fibromyalgia and so on. These patient groups do not exhibit
the same measurable pathological abnormalities as M.E. patients in these
(and other) tests. Recent research has also shown that postural stress
exacerbates cardiac insufficiency in M.E. and that this cardiac
insufficiency is the cause of many of the symptoms and much of the
disability of M.E. This pathology is also not seen in any of those illnesses
causing fatigue after exertion which are commonly misdiagnosed as 'CFS.' The
way people with M.E. respond to physical activity and orthostatic stress
(etc.) is profoundly different than in these other illnesses; it is an
entirely different problem, of a much greater magnitude.
What defines M.E. is not 'chronic fatigue' but a specific type of acquired
damage to the brain. M.E. is an acutely acquired illness with multi system
involvement which is characterised by post encephalitic damage to the brain
stem; a nerve centre through which many spinal nerve tracts connect with
higher centres in the brain in order to control all vital bodily functions -
this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.)
This diffuse brain injury is initiated by a virus infection which targets
the brain; M.E. represents a major attack on the central nervous system
(CNS) by the chronic effects of a viral infection. M.E. is an infectious and
primarily neurological disease process which occurs in epidemic and sporadic
forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934.
M.E. is primarily neurological, but because the brain controls all vital
bodily functions every bodily system is affected and so symptoms can also be
manifested by virtually all bodily systems including: cognitive, cardiac,
cardiovascular, immunological, endocrinological, respiratory, hormonal,
gastrointestinal and musculo-skeletal dysfunctions and damage. Symptoms are
also caused by a loss of normal internal homeostasis in M.E.; the body/brain
no longer responds appropriately to (to varying extents): physical activity,
cognitive exertion, sensory input and orthostatic stress.
At first glance a list of M.E. symptoms it may seem that every symptom
possible is mentioned, but the seemingly random list of symptoms in fact
form unique and distinct patterns - they are anything but 'random' for those
with knowledge of the illness and/or of how the illness effects the body's
various systems. Different people have a lot of different symptoms but the
general pattern and evolution of major symptoms are remarkably coherent from
patient to patient in M.E.; they fit a precise pattern that is nearly
identical from one patient to the next.
There is just no other illness that is even remotely like M.E.
M.E. is a distinct, recognisable disease entity which contrary to popular
belief is not difficult to diagnose and can in fact be diagnosed relatively
early in the course of the disease (within just a few weeks) - providing
that the physician has some experience with the illness. (The usual case of
M.E. is so distinct that people with M.E. can recognise fellow sufferers
almost in an instant.) Although there is (as yet) no single test which can
be used to diagnose M.E. there are a series of tests which can confirm a
suspected M.E. diagnosis. If all tests are normal, if specific abnormalities
are not seen on certain of these tests (eg. brain scans), then a diagnosis
of M.E. cannot be correct. (See Testing for Myalgic Encephalomyelitis for
more information.)
All of this is not simply theory, but is based upon an enormous body of
clinical information which has been published in prestigious peer-reviewed
journals all over the world and spans over 60 years. Confirmation of this
hypothesis is supported by electrical tests of muscle and of brain function
(including the subsequent development of PET and SPECT scans) and by
biochemical and hormonal assays. Newer scientific evidence is increasingly
strengthening this hypothesis. M.E. is neither 'mysterious' nor 'medically
unexplained. Many aspects of the pathophysiology of the disease have,
indeed, been medically explained in volumes of research articles. These are
well-documented, scientifically sound explanations for why patients are
bedridden, profoundly intellectually impaired, unable to maintain an upright
posture and so on.
M.E. affects all races and socio-economic groups and has been diagnosed all
over the world with a similar strike rate to multiple sclerosis. Children as
young as five can get M.E., as well as adults of all ages. M.E. can be
extremely disabling. 25% of M.E. sufferers are severely affected and
housebound and bedbound. In some cases Myalgic Encephalomyelitis can also be
progressive, or fatal. Governments around the world are currently spending
$0 a year on M.E. research.
------
Note 1:
For more information about the medical and political facts of M.E. (and for
references) see: Testing for Myalgic Encephalomyelitis, Putting Research and
Articles into Context, The Ultra-comprehensive Myalgic Encephalomyelitis
Symptom List and What is Myalgic Encephalomyelitis?
------
Note 2:
Note that many different illnesses may share a percentage of the individual
neurological, gastrointestinal or cognitive features of M.E., (and so on)
but there is no other illness which encompasses each of the specific
neurological, cognitive, immunological, gastrointestinal, cardiac and
cardiovascular, endocrinological, respiratory, hormonal and other features
and symptoms which make up M.E. This specific combination of symptoms is not
seen in any other illness. There are also a number of characteristics of
M.E. which are unique to the illness; most notably the way in which people
with M.E. react to physical and mental activity, and orthostatic stress etc.
and the way in which even low levels of these activities (beyond a person's
individual limits) can negatively affect long-term prognosis. The acute
onset of M.E. also sets it apart from many other illnesses commonly
associated with a gradual onset, as do many other characteristics. See: M.E.
and other illnesses and The misdiagnosis of CFS for more information.
------
Note 3:
What is CFS? CFS was created in a response to an outbreak of what was
unmistakably M.E., but this new name and definition did not describe the
known signs, symptoms, history and pathology of M.E. It described a disease
process that did not, and could not exist. All each of these flawed CFS
definitions 'define' is a heterogeneous (mixed) population of people with
various misdiagnosed psychiatric and miscellaneous non-psychiatric states
which have little in common but the symptom of fatigue (a symptom seen in
many illnesses but not a defining feature of M.E. nor even an essential
symptom of M.E.). The disease category 'CFS' has undoubtedly been used to
impose a false psychiatric paradigm of M.E. by allying it with various
unrelated psychiatric fatigue states and post-viral fatigue syndromes (etc)
for the benefit of various (proven) financial and political interests. CFS
and M.E. are NOT the same. For more information on this topic, including how
the CFS scam also negatively affects the media, doctors and the public etc.,
see: The misdiagnosis of CFS, Smoke and mirrors and Why the disease category
of 'CFS' must be abandoned. The truth about the organic and distinct
neurological illness M.E. must not be allowed to be buried under cover of
'fatigue' and 'CFS' for another 20 years!
------
www.ahummingbirdsguide.com
Best wishes everyone,
Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
Taking fatigue as the flagship symptom of a disease not only bestows the
disease with a certain Rip Van Winkle humour, but it removes the urgency of
the fact that the majority of [M.E.] symptoms are in effect CNS symptoms. To
most physical [M.E.] scientists and clinicians, [M.E.] represents a major
attack on the CNS by the chronic effects of a viral infection. Byron Hyde MD
in 'The Clinical and Scientific basis of M.E. edited by Byron Hyde MD. p
11-12
--

Hi All
This is a very important message especially for all UK residents,
expatriates, residents of overseas territories and Crown dependencies.
I found these petitions on the 10 Downing street government site in the
e-petitions section when i was searching. I think it is very important to
sign these when they come up, if enough of us sign them hopefully maybe
someone out there will start to take notice eventually and realize just how
many sufferers and carers there are actually out there in the uk.
The first one is for a Government policy for the research into, and support
of, people with ME/CFS the closing date is the 30th april this year and
there are only 13 signatures so far!! I think we can all do a bit better
than! Here is the link, lets see if we can make a bit of impact
http://petitions.pm.gov.uk/ME-CFS/#detail
This next one is for the prime minister to get the Health Service and
medical profession to accept the WHO classification of ME/CFS as an organic
neurological disorder and not as a psychosocial syndrome. Its closing date
is 22 January 2008 and there is well over 4000 signature on here so anyone
who hasn't signed it yet in the uk please do
http://petitions.pm.gov.uk/ME-is-real/
This one is for the Prime Minister to ensure those of us with 'invisible
disabilities and illnesses' are given a fair deal. Although i don't like the
wording of the petition it would still be nice to be given a fair deal
especially when it comes to the varying way they asses benefits etc. The
closing date for this one is 09 January 2008 and they have 685 signatures so
far.
http://petitions.pm.gov.uk/Invisibleillness/
This last one is for the Prime Minister to Allow the Long Term Sick on
Incapacity Benefit to have access to free dental and prescriptions. Now if
your anything like me and need lots of medications and trips to the dentist
etc then it all adds up, and its silly that anyone on income support and low
income can get it free but not if you are on disability benefits. The
closing date for this one is 11 March 2008 and they have only 21 signature
so far so lets see if we can boost that.
http://petitions.pm.gov.uk/chronicillness/
Please repost this to everywhere you know so we can get as many signatures
as possible.
regards
Izzy

UK sufferers are in big trouble if Dr Myhill goes
to the wall, she needs our support...
Mike
http://www.drmyhill.co.uk/article.cfm?id=391
OPEN LETTER RE MY GMC HEARING IN SEPTEMBER 2007
Dr Sarah Myhill MB BS, Upper Weston, Llangunllo,
Knighton, Powys, UK LD7 1SL Tel: 01547550331 Fax:
01547550339 E-mail: office@...
Website: www.drmyhill.co.uk

Hi, All!
"For the moment, we shan't be sending out copies of the very last
item on the Order Form the conclusions of the Gibson Inquiry
Report into the state of ME research in the UK, together with a proposed
Early Day Motion (EDM) to be signed by MPs and a template letter to be
sent to MPs. This is because Dr Ian Gibson MP will not launching the EDM
while there is a very real prospect of a counter-campaign being mounted
against it by an ME activist faction. This news arrived after ME
Essential had been sent to the printer."
I can understand the MEA not sending out the proposed EDM and template
letter - because the EDM hasn't actually been launched - but why not the
"conclusions of Gibson Inquiry Report into the state of ME research in the
UK"?
As for the notion that "there is a very real prospect of a counter-campaign
being mounted against it by an ME activist faction" - if Ian Gibson takes
such a (real or imagined) 'counter-campaign' by 'an ME activist faction'
seriously, perhaps it's because he realises that there are people out
there, whose lives might be affected by it, who don't support the proposed
EDM and that consultation with the *wider* M.E. community on all relevant
matters is what is actually needed.
BW
John
*****************************************************************************
1. MEA: Latest ME Essential magazine
Posted by: "MEagenda" me.agenda@... meagenda
Date: Thu Apr 12, 2007 1:36 pm ((PDT))
ME Essential, the quarterly magazine of The ME Association, should be
dropping through membersí letterboxes in the next couple of days. At 44
pages, itís our biggest issue in years.
The magazine contains information on how we hope to make the most of the
main findings of the Gibson Inquiry Report into the state of ME research in
the UK and the latest state of play in the fight to persuade NICE to
improve its dreadful clinical practice guidance for ME/CFS.
But one of our main campaign trails has gone cold ñ thanks to the dead hand
of bureaucracy at the Department for Work and Pensions.
The DWP has ruled out any further discussion over its ME/CFS medical
guideline for decision-makers responding to claims for Disability Living
Allowance and Carers Allowance. So, for the time being, it looks as though
we are stuck with Version Nine.
The ME Association is cementing its growing relationship with The Young ME
Sufferers Trust by publishing a major article by their executive drector
Jane Colby. In ìSchools swept by ME plagueí, Jane reflects on a major
headline 10 years ago which changed the way people thought about ME in
children and young people.
And Jane has also written a leaflet on ìME, Children and Young Peopleî
which is now available by using our new four-page pullout Order Form in the
centre pages, or at our website http://www.meassociation.org.uk
In January, we said a sad farewell to MEA trustee Angie Flack, who died
after a six-months-battle against a highly aggressive brain tumour. In this
issue, we explain why Angie means so much to The ME Association today and,
of course, we shall never see her like again. We shall miss her.
Also inside:
MEDICINE
MEA medical adviser Dr Charles Shepherd reviews the evidence for the use of
Essential Fatty Acids in the treatment of ME/CFS symptoms ñ concluding that
things like eicosapentaenoic acid (EPA), fish oil and Evening Primrose Oil
supplements appear safe and generally well tolerated.
A bumper Question and Answer session with Dr Shepherd on four ìhotî topics:
daytime sleepiness; creatine supplements; beta-blockers and the possible
use of the Disability Discrimination Act in a negotiated return to work.
RESEARCH
Professor John Gow returns to work on his vital MEA-funded genetic study at
Glasgow Caledonian University. We chart the course of progress and tell
readers how they can contribute to The MEA Ramsay Research Fund which
helped to make it happen.
An important anti-viral study at Stanford University, California: Rebecca
Anne Smith from The Times describes a small study on the use of
valganciclovir (Valcyte) with people with ME which holds out some hope for
future treatment.
Nutritionist Sue Luscombe discusses those end-of--2006 headlines which
suggested that eating dark chocolate might make people with ME feel better.
It might have been a yummy morsel of a research study, but was ME ever
included in the wording on the wrapper?
NEWS
Store worker wins £700,000 payout.
MEA launches new website at the same address: http://www.meassociation.org.uk
The Queen honours Dorset Group president
THE MEA STORY SO FAR
Our chairman Neil Riley reports on his first full year in office, and
thereís a range of stories from our last Board of Trusteesí meeting, an
Extraordinary General Meeting to tweak our governing Memorandum and
Articles of Association and our Annual General Meeting.
Treasurer Ewan Dale reports how, although not flush with funds, financially
we remain on an even keel. And we were delighted to welcome our patron,
Lady Hagart-Alexander, and our former chairman John Brodrick, who both
joined us for our EGM and AGM in Bicester.
NEW MEA ORDER FORM
A four-page pullout Order Form is included in the middle of ME Essential,
packed with items of literature.
New leaflets are:
a.. Dr Shepherdís management file on Essential Fatty Acids,
b.. Jane Colbyís leaflet on ìME, Children and MEî,
c.. Dr Ho-Yenís article on the internet myths that surround Lyme Disease,
d.. ìHealthy eating and ME/CFSî, by senior dietitian Rhona Wilson who has
worked on an MEA-funded study, and
e.. a new ME Connect leaflet called ìCaring for a person with MEî,
prepared with the help of the Princess Royal Trust for Carers, which runs
100 carers centres throughout the UK.
Other new items include:
a.. the transcript of our medical meeting at Chester last year (speakers:
Dr William Weir and Dr Charles Shepherd), and
b.. the Department for Work and Pensionsí controversial medical guidance
for ME/CFS, together with a copy of the considered response from a group of
leading charities, including The ME Association.
For the moment, we shanít be sending out copies of the very last item on
the Order Form ñ the conclusions of the Gibson Inquiry Report into the
state of ME research in the UK, together with a proposed Early Day Motion
(EDM) to be signed by MPs and a template letter to be sent to MPs. This is
because Dr Ian Gibson MP will not launching the EDM while there is a very
real prospect of a counter-campaign being mounted against it by an ME
activist faction. This news arrived after ME Essential had been sent to the
printer.
BOOK REVIEWS
Ba Stafford discusses Alex Bartonís book ìRecovery from CFS: 50 personal
storiesî and ìToxic Childhood ñ how the modern world is damaging our
children and what can we do about it?î by Sue Palmer. Tony Britton reviews
Dr Darrel Ho-Yenís paperback ìTicks: your pets, your family & youî.
FEATURES
a.. Severe sufferer Margaret Tracer writes about the postmanís visit, TV
and radio and the simple pleasures that springtime brings.
b.. Tony Dolphin explains why he uprooted from wet and windy Lincolnshire
and went to live in southern Spain.
c.. And ME Essential cover girl Kerri Simpson, better known to those who
have bought her first book ìKarmaî as Holly A Harvey, explains why it took
years to get it published.
FUNDRAISING
a.. A birthday year good turn which became a massive knit-a-thon for Jan
Scarrott.
b.. Scottish minister, the Rev Stephen Brown, who ditched his 50th
birthday party in favour of staging a concert for The MEA.
c.. Our vice-chairman Rick Osman runs for us again in The London
Marathon. You can find his online sponsor form at
https://meassociation.workwithus.org/rickosman
d.. How a public vote propelled one of our top fundraisers last year,
Katharine Vile, into the elite Triathlon Academy.
LETTERS
NICE compliment from Action for ME founder ñ plus hillwaking, light bulbs,
computer rays, could ME be masking something else?, insomnia, Blue Badges,
Esther Rantzen and the ìLightning Processî, and dark chocolate.
Tony Britton
The ME Association

Jan or others,
Write Roche Parmaceurticals and read again from lead chemist who
developed this drug 12 years ago "However, I did work on some of the
chemistry for this drug 12 years ago when it was being developed to
treat cytomegalovirus, which causes blindness in many people with HIV.
That treatment was very successful."
Tess (scientist and family member who is sick with neurological
disease in Palo Alto)

Clarification...Cytomealavirsus (CMV) is a Herpes virus. HHV-6 a and
b are Herpes viruses. EBV is a Herpes virus.
valgancyclovir was developed for those people with HIV and CMV. CMV
was causing blindness.
Mothers who are pregnant with CMV (not HIV) must get the CMV under
control, other wise risk having baby that becomes blind. Usually a
C-Section is done. This is well known for over 50 years.
The article that mentioned this drug for Roche Pharm and Stanford
research did so because ONE person with CFS and EBV (another herpes
virsu) seemed to get better. Now there are Nine people.
Will post article on this drug from Roche and Stanford.
Tess
Write Roche Parmaceurticals and read again from lead chemist who
developed this drug 12 years ago "However, I did work on some of the
chemistry for this drug 12 years ago when it was being developed to
treat cytomegalovirus, which causes blindness in many people with HIV
and new born babies when mothers have active CMV.
That treatment was very successful."
Tess (scientist and family member who is sick with neurological
disease in Palo Alto)

Hi according to Roache Pharmaceutical company, Valganciclovir was
developed for CMV (a herpes virsu) and HIV...NOT HHV-6.
I would hope someone would write Roache Pharm in Palo Alto California
and ask for the correct story.
"I did work on some of the chemistry for this drug 12 years ago when
it was being developed to treat cytomegalovirus, which causes
blindness in many people with HIV. That treatment was very successful..."
As written from a lead chemist at Roache Pharm.
Tess

This is great news.
I hope people have hope.
The USA may be dragging behind but we have Dan Peterson and the hard
working Patient activists who have been working for over 20 years that
are seeing things turn around for the patients.
Great job with Australia and Norway and the Gibson report and Hooper
and other good UK people.
tess

This is great news.
Australia, Chris Hunter did a great job a few weeks ago.
The great Dan Peterson was there. He will be in UK too.
Yess
tess and family

Good question!
Another good one of many woiuld be:
On what possible grounds do you deny that ME can be fatal? There is so much
evidence to support this, what part of it wasn't enough, what about Sophia
Mirza? It's offensive to say ME can't be fatal considering all the evidence
and all thise with severe ME who are right now fighting for their lives,
isn't it?
And what about the support of CBT and GET!
Surely these commenst, and much of the other info on your site, relates to
CFS and not ME? Is it really right the term ME be used at al, with respect,
because clearly you mean well, there is very little good info on ME here,
but much on CFS and fatigue etc.
Best wishes,
Jodi
--
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
--
"Is CFS an epidemic? An epidemic is defined as an unusual occurrence of
disease. What is so remarkable and disturbing about this one is that it is
an epidemic hiding in plain sight. Despite clear evidence that CFS is an
epidemic, the government health agencies responsible for tracking and
curbing disease outbreaks have continually minimized this threat with bland
reassurances to the public." Hillary Johnson (author of Osler's Web) --

ME Essential, the quarterly magazine of The ME Association, should be dropping
through members letterboxes in the next couple of days. At 44 pages, its our
biggest issue in years.
The magazine contains information on how we hope to make the most of the main
findings of the Gibson Inquiry Report into the state of ME research in the UK
and the latest state of play in the fight to persuade NICE to improve its
dreadful clinical practice guidance for ME/CFS.
But one of our main campaign trails has gone cold thanks to the dead hand of
bureaucracy at the Department for Work and Pensions.
The DWP has ruled out any further discussion over its ME/CFS medical guideline
for decision-makers responding to claims for Disability Living Allowance and
Carers Allowance. So, for the time being, it looks as though we are stuck with
Version Nine.
The ME Association is cementing its growing relationship with The Young ME
Sufferers Trust by publishing a major article by their executive drector Jane
Colby. In Schools swept by ME plague, Jane reflects on a major headline 10
years ago which changed the way people thought about ME in children and young
people.
And Jane has also written a leaflet on ME, Children and Young People which is
now available by using our new four-page pullout Order Form in the centre pages,
or at our website http://www.meassociation.org.uk
In January, we said a sad farewell to MEA trustee Angie Flack, who died after a
six-months-battle against a highly aggressive brain tumour. In this issue, we
explain why Angie means so much to The ME Association today and, of course, we
shall never see her like again. We shall miss her.
Also inside:
MEDICINE
MEA medical adviser Dr Charles Shepherd reviews the evidence for the use of
Essential Fatty Acids in the treatment of ME/CFS symptoms concluding that
things like eicosapentaenoic acid (EPA), fish oil and Evening Primrose Oil
supplements appear safe and generally well tolerated.
A bumper Question and Answer session with Dr Shepherd on four hot topics:
daytime sleepiness; creatine supplements; beta-blockers and the possible use of
the Disability Discrimination Act in a negotiated return to work.
RESEARCH
Professor John Gow returns to work on his vital MEA-funded genetic study at
Glasgow Caledonian University. We chart the course of progress and tell readers
how they can contribute to The MEA Ramsay Research Fund which helped to make it
happen.
An important anti-viral study at Stanford University, California: Rebecca Anne
Smith from The Times describes a small study on the use of valganciclovir
(Valcyte) with people with ME which holds out some hope for future treatment.
Nutritionist Sue Luscombe discusses those end-of--2006 headlines which suggested
that eating dark chocolate might make people with ME feel better. It might have
been a yummy morsel of a research study, but was ME ever included in the wording
on the wrapper?
NEWS
Store worker wins £700,000 payout.
MEA launches new website at the same address: http://www.meassociation.org.uk
The Queen honours Dorset Group president
THE MEA STORY SO FAR
Our chairman Neil Riley reports on his first full year in office, and theres a
range of stories from our last Board of Trustees meeting, an Extraordinary
General Meeting to tweak our governing Memorandum and Articles of Association
and our Annual General Meeting.
Treasurer Ewan Dale reports how, although not flush with funds, financially we
remain on an even keel. And we were delighted to welcome our patron, Lady
Hagart-Alexander, and our former chairman John Brodrick, who both joined us for
our EGM and AGM in Bicester.
NEW MEA ORDER FORM
A four-page pullout Order Form is included in the middle of ME Essential, packed
with items of literature.
New leaflets are:
a.. Dr Shepherds management file on Essential Fatty Acids,
b.. Jane Colbys leaflet on ME, Children and ME,
c.. Dr Ho-Yens article on the internet myths that surround Lyme Disease,
d.. Healthy eating and ME/CFS, by senior dietitian Rhona Wilson who has
worked on an MEA-funded study, and
e.. a new ME Connect leaflet called Caring for a person with ME, prepared
with the help of the Princess Royal Trust for Carers, which runs 100 carers
centres throughout the UK.
Other new items include:
a.. the transcript of our medical meeting at Chester last year (speakers: Dr
William Weir and Dr Charles Shepherd), and
b.. the Department for Work and Pensions controversial medical guidance for
ME/CFS, together with a copy of the considered response from a group of leading
charities, including The ME Association.
For the moment, we shant be sending out copies of the very last item on the
Order Form the conclusions of the Gibson Inquiry Report into the state of ME
research in the UK, together with a proposed Early Day Motion (EDM) to be signed
by MPs and a template letter to be sent to MPs. This is because Dr Ian Gibson MP
will not launching the EDM while there is a very real prospect of a
counter-campaign being mounted against it by an ME activist faction. This news
arrived after ME Essential had been sent to the printer.
BOOK REVIEWS
Ba Stafford discusses Alex Bartons book Recovery from CFS: 50 personal
stories and Toxic Childhood how the modern world is damaging our children
and what can we do about it? by Sue Palmer. Tony Britton reviews Dr Darrel
Ho-Yens paperback Ticks: your pets, your family & you.
FEATURES
a.. Severe sufferer Margaret Tracer writes about the postmans visit, TV and
radio and the simple pleasures that springtime brings.
b.. Tony Dolphin explains why he uprooted from wet and windy Lincolnshire and
went to live in southern Spain.
c.. And ME Essential cover girl Kerri Simpson, better known to those who have
bought her first book Karma as Holly A Harvey, explains why it took years to
get it published.
FUNDRAISING
a.. A birthday year good turn which became a massive knit-a-thon for Jan
Scarrott.
b.. Scottish minister, the Rev Stephen Brown, who ditched his 50th birthday
party in favour of staging a concert for The MEA.
c.. Our vice-chairman Rick Osman runs for us again in The London Marathon. You
can find his online sponsor form at
https://meassociation.workwithus.org/rickosman
d.. How a public vote propelled one of our top fundraisers last year,
Katharine Vile, into the elite Triathlon Academy.
LETTERS
NICE compliment from Action for ME founder plus hillwaking, light bulbs,
computer rays, could ME be masking something else?, insomnia, Blue Badges,
Esther Rantzen and the Lightning Process, and dark chocolate.
Tony Britton
The ME Association

My new website is finally done (well as done as ever, no doubt i will
be adding things all the time)
http://fmshmscfs.bravehost.com/
it took me just over a year! arrghhh...LOL! But its much better with
more info on coping and managing tips, stories, and a working chat
room and message board. The chat room is schedulded for mondays 9-10
GMT but can be used 24/7. Thought it would be especially useful as no

Hi, Dayna!
On your main page it says,
"This is a FREE ONLINE community website specifically designed for people
suffering from
FIBROMYALGIA
(FMS)
HYPERMOBILITY SYNDROME
(HMS)
CHRONIC FATIGUE SYNDROME / MYALGIC ENCEPHALOPATHY
(CFS / ME)"
I'm concerned at the use of the term "CHRONIC FATIGUE SYNDROME / MYALGIC
ENCEPHALOPATHY", since there is no listing by the World Health Organisation
of the term "myalgic encephalopathy" - although there is (at G93.3) for
myalgic encephalomyelitis.
I just wondered why you don't use the latter term.
BW
John
*******************************************************************************
2. My "NEW" cfs/m.e etc Website... PLEASE CHECK OUT!
Posted by: "Dayna" daynauk2001@... daynauk2001
Date: Sat Apr 7, 2007 12:21 am ((PDT))
My new website is finally done (well as done as ever, no doubt i will
be adding things all the time)
http://fmshmscfs.bravehost.com/
it took me just over a year! arrghhh...LOL! But its much better with
more info on coping and managing tips, stories, and a working chat
room and message board. The chat room is schedulded for mondays 9-10
GMT but can be used 24/7. Thought it would be especially useful as no