Greg Crowhurst has a wife who, like this writer, suffers from M.E. He is
also a resident of Norfolk - but there the commonality ends.
As with Kevin Short (another Norfolk resident) before him, judging from his
recent actions Mr Crowhurst seems intent on using the internet to damage
the reputation of an active and highly-regarded local support group, "M.E.
Support-Norfolk" (MES-N).
Indicative of an ongoing collusion between Kevin Short and the Crowhursts,
Linda Crowhurst had a letter published on 25 June in the Norfolk press
lauding Short's "momentous victory" in securing a Judicial Review of the
NICE guideline on 'CFS/ME', while omitting to mention anyone and everyone
else involved in the process - let alone the other Judicial Review being
pursued with the help of the One Click Group, and which is supported by
MES-N.
Further indication of the Short/Crowhurst collusion is that some time back
committee members of MES-N received a 'confidential memorandum' (copied to
unnamed other parties, so there's nothing confidential about it) from Kevin
Short, urging support for Greg Crowhurst as the representative of severe
M.E. sufferers in a group of Norfolk and Suffolk residents collectively
known as the Service Design Project Group (SDPG), whose aim is to negotiate
with our Primary Care Trusts (PCTs) with regards to a local service.
The committee of MES-N decided not to become involved with the SDPG - not
because we disagree with its aims, which we share, of course - but mainly
because we have more than enough on our plates already (two of the five of
us are severe M.E. sufferers, for one thing) and have been doing our own
lobbying of the health authority for some considerable time already, a
point which has clearly escaped Greg Crowhurst's notice so far.
At one stage Mr Crowhurst was Chair of the SDPG, but not, it transpires,
for very long. Kevin Short, likewise, is also no longer a member. The
motivation behind both these gentlemen's otherwise inexplicable behaviour
concerning MES-N seemed at one point to be simply that we won't do *their*
bidding and won't toe *their* line when it comes to dealing with
'political' issues. What they also have in common, however, is support and
praise for the 'Gibson Inquiry Report', a stance which is not shared by
those who view that report as being at best unhelpful, and at worst
harmful, to M.E. sufferers and their carers.
Having had his defamatory allegations and accusations against MES-N refuted
on the internet, Mr Short has gone quiet on that front. Mr Crowhurst,
however, appears to have picked up the baton in his place:
On 25 May, Andy Croft, at that time a committee member of MES-N (he has
since resigned and not renewed his membership of the group), sent an e-mail
about a meeting he'd attended of the "Norfolk Coalition of Disabled People"
to the rest of the committee.
He copied this e-mail to Greg Crowhurst, who is not - and to my knowledge
never has been - a member of MES-N, let alone on its committee, because, as
Andy subsequently explained, he wanted to "acknowledge issues" he'd
discussed with Greg and to show that he was "making an effort to bring the
issue of local patient consultation with the NHS to the committee's
attention..."
The same day, 25 May, Greg sent a one-line response to Andy, which he also
copied to the committee:
"Andy, Exactly what is MESN doing for the severely affected? Greg"
The committee had not been aware that Greg had been sent Andy's 'NCODP'
e-mail until we received copies of Greg's response to it. In my own
opinion, Greg's question was sarcastic. I nevertheless sent my personal
response to him (28 May 2008):
"Hi, Greg! I don't know why/how you received a copy of Andy's e-mail to the
MES-N committee about the the 23 May NCODP meeting, but since you did, a
couple of points need to be cleared up. (I have no comment to make on the
references ascribed to me regarding either Kevin Short or EAME.)
"I have appended below MES-N's 'mission statement' {1}. Andy writes that he
is 'unhappy with MESN not supporting its [the service redesign project]
current aims and actions which are for biomedical provision and diagnosis
testing with no CBT or GET and perfectly aligned with MESN's stated aims
and objectives.'
"You will see from 'M.E. SUPPORT-NORFOLK: WHO WE ARE' that we make our
position perfectly clear on these very points. Our stance is, indeed, the
same as that of the service redesign project; we just happen to be pursuing
these matters on our own initiative and under our own name. I anticipate
the argument that MES-N should join with others to put pressure on the
powers-that-be, but it can equally be argued that others ought to join
MES-N, for the same reason. (Indeed, I personally find it intriguing that
there are M.E. sufferers/carers in Norfolk who are *not* members of either
'West Norfolk M.E. Support' or 'M.E. Support-Norfolk', but that's by the
by.)
"In response to Andy's e-mail you wrote, 'Exactly what is MESN doing for
the severely affected?'
"This question cannot be answered directly, since 'the severely affected'
is an abstract concept. If one were to ask, however, 'What is MESN doing
for severely affected M.E. sufferers?' the answer would be 'Whatever,
within our power, our severely affected members ask us to do for them.'
"What we do generally, other than in response to specific requests from
individuals, is documented in our literature and monthly newsletter.
"Best wishes, John"
Greg responded that day:
"Dear John, As you know I meant severe ME sufferers. I just want to know
exactly what issues MESN, on your own initiative and under your own name,
as you stated, are pursuing on behalf of severe ME sufferers in Norfolk? I
do not have access to your newsletters and information. and meanwhile my
wife is in utter torment. Best wishes, Greg"
My reply to this (29 May 2008) was:
"Hi, Greg! Yes, I realise that by 'the severely affected' you mean 'severe
M.E. sufferers'. I wasn't trying to be facetious (if that's what you
thought), only pointing out that your question was too abstract to be
answered in a direct way: we do what we can for individuals, with their
individual needs.
"As for the general picture, we follow our constitution's Aims and
Objectives, which are 'to provide information and support to people with
M.E., their carers, families and friends; to raise awareness of M.E.
locally within the media, health care organisations and the general public;
and to campaign for more recognition, research and better care and benefits
for people with M.E.'
"I can't go into many specifics here because I can't remember them all and
I would need to go through all our committee minutes, correspondence and
back issues of MEMO (our newsletter) to compile a comprehensive list.
"Off the top of my head I can refer to the talks by Dr Carruthers and Prof
Hooper we sponsored in 2005, along with the DVDs produced from those talks
and distributed to health centres and surgeries throughout Norfolk; the
various speakers (eg Betty Dowsett, Jane Colby, Nigel Speight) we have had
following our AGMs over the years; leafletting campaigns we have conducted,
usually in M.E. Awareness Week; putting our literature in hospitals and
surgeries; informing the county's MPs; lobbying various departments within
the health service, including the PCT; issuing press releases and writing
to the media; and challenging the DWP, NICE etc.
"I don't know that we've done anything specifically for the severely
affected as such, any more than we've done anything specifically for the
mildly or moderately affected. We just do what we can, when we can, on
behalf of M.E. sufferers generally. Of course, in day-to-day individual
practical terms, that means for our members, since we are obviously not in
contact with non-members so don't know what their specific needs are.
"I was helpless, bedridden and almost praying for death in the first few
months of becoming ill. Thankfully, I improved gradually for a year or so
(and honestly believed at the time that I was 'recovering' and would soon
be back teaching). However, since first reaching a peak back in 1995 I have
slowly but steadily declined and live with the realistic possibility that I
will regress back to that earlier hell. If things continue as they are, it
is only a matter of time before I am unable to continue producing MEMO,
serve on our committee or do anything at all on behalf of myself or other
sufferers. In the meantime I (as do the other members of the MES-N
committee and individual members of our group who are able and motivated
enough) keep at it, and it consumes the major part of my life.
"Best wishes to Linda, with whom I fully empathise.
"Cheers, John"
To which, that day, Greg responded:
"Thanks John. Very best wishes. Greg"
And that, one would have thought, was that. Sorted.
But no.
Mr Crowhurst then took it upon himself to post the following to various
places on the internet, selecting only a partial quote from my original
response of 28 May 2008 and missing out the critical second sentence of the
paragraph, which explained why his question to Andy Croft couldn't be
answered directly, i.e. "If one were to ask, however, 'What is MESN doing
for severely affected M.E. sufferers?' the answer would be 'Whatever,
within our power, our severely affected members ask us to do for them'" -
and failing completely to mention the detailed information I had
subsequently furnished him with:
"From: Greg Crowhurst <gregcrowhurst@...
"There is a place beyond anger
"Greg Crowhurst, 9th June 2008
"There is a place beyond anger. While my wife sits, hunched in pain, while
there is nothing I can even make her to eat, while she sits tormented by
noise, by movement, in silence, Andrew Dillon, Chief Executive of NICE,
through my MP, Norman Lamb, writes to me. He says:
"'Our guidance does not recommend CBT/GET for those with severe ME/CFS,
instead it recommends activity management administered by phone, email or
in person, to be reviewed regularly and often.'
"Activity management - oh, so that is what she needs?
"'Activity management', as recommended by NICE, is based upon the three
principles of: prioritising, planning and pacing.
"Where, I wonder, would Mr Dillon begin ??
"No matter, do you know what my wife's response would be why not read it on:
www.metrainingco.org.uk
"You probably cannot imagine what it is like to be trapped in a cycle of
never ending opposite:
"Where rest leads to increased dysfunction. Where sleep leads to a complete
ceasing of your body's ability to move and an agony of increased pain.
Where touch, noise, communication, even tenderness are experienced as an
assault on your physical and mental processes.
"If you want to engage with people with severe ME then try imagining a
world that responds completely the opposite way to your intention, where
exercise leads to inability and increasing disability. Get your sleep under
control; Control the pain; Pace your energy; Just relax your muscles; these
things are nonsense"
"Linda Crowhurst: Get Over It.
"NICE's recommendation that people with severe CFS/ME 'should be offered an
individually tailored activity management programme as the core therapeutic
strategy, which may: 'draw on the principles of Cognitive behavioural
therapy and Graded exercise therapy (1.9.3.1), is extraordinary, and has
led to the guideline being condemned by many patient groups.
"There is a place beyond anger:
"1. when the psychiatric lobby are reported declaring that ME no longer exists.
"2. when I hear that Action for ME are calling for more, and better trained
'therapists'.
"3. when I wrote to my local group, ME Support Norfolk, and asked them to
tell me exactly what they are doing for the severely affected and they
responded:
"'This question cannot be answered directly, since "the severely affected"
is an abstract concept.'
"I am an artist. Yesterday I painted my rage: my eyes are tight shut, my
brow knotted up, as if in agony, my mouth wide open in a teeth-bared scream.
"There is a place beyond anger, where I sit, for hours and hours, every
day, just holding my wife, when I can. Trying to ease her physical torment.
"What hope is there of getting proper medical tests and treatment or
validation for this severely disabling, multi-dysfunctional, neurological
disease, when these are the attitudes and views of the people who represent
ME to the world ?
"When severe ME sufferers are alone and off the radar?"
I posted a response to this uncalled for sullying of our support group on
the internet, pointing out that the "abstract concept" quote had been taken
out of context and that *before* writing his "There is a place beyond
anger" posting Greg had received an even fuller reply to his question {2}.
The fact is that Greg Crowhurst did not, as he claims, write to 'his' local
support group: he simply wrote a response to an e-mail sent to him by Andy
Croft.
It is also a fact that my response to the question "Exactly what is MESN
doing for the severely affected?" was just that, *my* response - and not,
as Greg claims, that of "M.E. Support-Norfolk".
So when Mr Crowhurst says that he asked 'his' local support group a
question and 'they' replied, he is not telling the truth - and he knows it.
One might think that the matter having been clarified for him, Mr Crowhurst
would at least admit that he'd got things wrong.
But no.
Mr Crowhurst chose to make matters *even worse* by posting the following
'apology' (and this time the sarcasm is unmistakable) to the internet:
"An Apology .Greg Crowhurst 16th June 2008
"(may be reposted)
"I am sorry, for asking my local group what they are doing for the severely
affected. for being angry they are not involved politically. ME is a
political issue, that is its travesty. If you are not involved politically,
then you are not being effective. You are not helping. You are not giving
us any hope. You are not challenging, changing, overturning. You are not
taking a stand, fighting our corner, walking your talk. You are not walking
your talk.
"For where I sit, faced with yet another day of my wife's pain and
suffering, I am not sure I have much patience anymore. For that I am sorry.
From where I reach out these hands that long to heal, I am not sure I know
how to cope; not that I ever did.
"I live in the moment, it's best not to stand back too much, for then,
surely after 15 solid years of never-ending agony shaking every inch of my
wife's ravished body, I would go mad with despair.
"If I thought about it too much. But I have my faith and my anger. That is
why I dared to ask."
My comment on this was:
"Dear Greg
"I'm sorry too, for assuming that your remarks, both here and in your
'beyond anger' posting, were aimed at 'M.E. Support-Norfolk'. I tend to
forget that we have 'West Norfolk M.E. Support' and 'BRAME' also here in
this county.
"You refer to 'your' local support group. Since you are not a member of
'MES-N' (despite a number of invitations to join), I guess your reference
is to one of the other two groups.
"However - if you really *are* talking about 'MES-N', can you please
explain what you mean by 'being angry they are not involved politically'?
"Especially since you are not in any way involved in what we do, where on
earth do you get that idea?
"BW, John"
There was no response forthcoming - but my attention was recently drawn to
a short video entitled "Walk your Talk!" which Mr Crowhurst had placed on
YouTube at the beginning of June (i.e. after he'd received my detailed
response to his question to Andy Croft), in which he repeats the same
falsehoods contained in his written postings.
Sitting in front of a painting of his wife, he says:
"Recently I wrote - a couple of days ago really - to my local M.E. support
group, because I'm really worried about Linda, and I said, 'What are you
doing [holds up hands as if in supplication/prayer] for the severely
affected?' and I can't tell you how shocked I am, and disturbed, by the
reply I got. This is a big group, I believe there's over a hundred members,
I think maybe a hundred and thirty, something like that, and they wrote
back initially and they said, 'Well, the severely affected - um, that's an
abstract concept' [snickers and points behind to painting]. There's nothing
abstract about this!
"Anyway, I wrote back and said, 'Look, I'm talking about people with severe
M.E. What are you doing for them?' And I got a long e-mail back, without
much substance really, and anyway, it ended up, they're not doing - they
don't really, it seems to me, trying to make sense of it - they don't
really recognise severe M.E., and at the end of the day they're not
involved politically, as far as I can see, in the struggle. They're
providing support for people, which is good, and gardening, and helping
people in those sort of ways, but it's not up to political involvement.
Actually, this particular organisation, paradoxically, puts out a very
political newsletter.
"So the issue really is, 'Walk your talk'. I really do believe that given
the situation, which we all know about, it's not enough just to know about
it, just to talk about it, just to publish radical articles. In my mind it
*is* a political fight. As well as providing the practical and emotional
support - obviously people need that - we have to be there, in the health
authorities, we have to be there at the highest level, pushing and pushing
and pushing and fighting this politically because after all this time I
don't see things getting better, I just see the psychiatric lobby going
from strength to strength and infiltrating more and more and more and I'm
just so shocked by the response I got from this little organisation locally.
"And I would just like to ask, in this video, if anybody's watching, what
is it like where you live? What is *your* local organisation doing for the
severely affected? Perhaps you could write to your organisation or if
you're part of an organisation you could write to *me* and tell me what
*are* you doing for people with severe M.E. It would be really, really good
to find that out, really interesting, and I wonder if what is happening
here locally is happening up and down the country, and no wonder we're
getting nowhere. Thank you."
The following are among the subsequent negative responses, posted to the
comment facility on YouTube, engendered by "Walk your Talk!":
"Abstract concept?" Wtf??? That group clearly isn't working in the best
interest of patients. They need their @sses kicked." (neelubird)
"too many people diagnosed with ME/CFS have no idea what the illness is.
They have no burning pains, exacerbated by illness. They are the ones who
recover, and are welll enough to run these local groups. They never had ME,
thats why exercise, diet and relaxation worked for them. Thats why serious
is an abstrat mythical term for them." (temperance123)
'patrick3235' posted his own video, which begins, "Hi, I was totally
dismayed and completely disgusted by the response that Greg and Linda got
when they contacted their local ME group to find out what support they
might offer for someone who is suffering from severe ME..."
On the positive side, 'MEAgenda' posted the following supportive comment:
"On 4 July, a mission statement from M.E. Support-Norfolk was published on
WordPress blog ME agenda. On 18 June, the site published a note of thanks
to the committee of M.E. Support-Norfolk for devoting eight pages of two of
its Spring newsletters to raising awareness of the concerns surrounding the
RSM 'CFS' Conference and for promoting two separate initiatives which had
been organised in protest against this conference. A response has been
published by the Chair to unwarranted criticism."
A nod in the direction of fairness, one might think.
But no.
The above statement was rapidly deleted by Mr Crowhurst and a subsequent
attempt by 'MEAgenda' to post a further comment was blocked.
So Greg Crowhurst, who, by his own admission, does not "have access" to our
"very political newsletter", alleges that "M.E. Support-Norfolk" is not
"involved politically...in the struggle" and he is "shocked by the
response" he got "from this little organisation locally", wanting to know
if "what is happening here locally is happening up and down the country..."
Well, if it hasn't sunk in yet from the e-mail which was "without much
substance really", I have news for Mr Crowhurst: "M.E. Support-Norfolk", as
well as providing information, practical help and support, has been
fighting politically on behalf of M.E. sufferers for over two decades -
considerably longer than he has been spending time defaming us on the
internet, and we won't be deflected from that struggle through being forced
to expend valuable time and strength in dealing with the kind of insidious
attempts at sabotage he seems determined to engage in, irrespective of any
inconvenient truths.
Perhaps he also needs reminding of the ninth Commandment:
"You shall not give false evidence against your neighbour."
If Mr Crowhurst has asked BRAME, "West Norfolk M.E. Support" or the "Great
Yarmouth Drop-In Support Group" (all in Norfolk) what *they* are "doing for
the severely affected", he hasn't made the dialogue public.
He should, above all, consider the plight of M.E. sufferers who turn to
local support groups for genuine practical help and support because they
are not getting it elsewhere, and further consider the possiblility that
his unfounded and unjustifiable defamation of "M.E. Support-Norfolk" will
deter Norfolk M.E. sufferers and carers from accessing that help and
support when they most need it.
His behaviour is grossly irresponsible and indefensible.
John Sayer
********************************************************************************
Notes:
{1} M.E. SUPPORT-NORFOLK: WHO WE ARE
Myalgic Encephalomyelitis has been categorised as a neurological disorder
by the World Health Organisation (at ICD-10 G93.3) since 1969.
"M.E. Support-Norfolk" - the initials in our name stand for Myalgic
Encephalomyelitis - has adopted the 'Canadian Guidelines' definition of
M.E. (downloadable from the internet at http://tinyurl.com/br8oa.
We have been in existence for over twenty years now, having originally
begun as a local branch of one of the national M.E. charities and since
2000, when our current name was adopted, have been an independent,
self-financing support group.
We have our own library of books, videotapes, DVDs and audiobooks for
members to borrow. Most of these are naturally M.E.-related, but some are
purely for enjoyment! Members (membership is currently £6.00 per year) also
receive our monthly newsletter "MEMO".
Each April we hold an Annual General Meeting for members, which is
sometimes followed by a guest speaker whose presentation is open to the
public.
We have also sponsored the occasional presentation at times other than our
AGM; for example, Dr. Bruce Carruthers (principal author of the 'Canadian
Guidelines') and Prof. Malcolm Hooper (Emeritus Professor of Medicinal
Chemistry and leading champion of M.E. & Gulf War Syndrome sufferers) gave
talks in Norwich in 2005. Both presentations were filmed and made available
on DVD and videotape and a special DVD double-pack was also distributed to
all GP surgeries and health centres throughout Norfolk.
Regular informal monthly sup