AN OPEN LETTER TO: Dr Ian Gibson MP, House of Commons.
FROM: Kevin Short.
DATE: 05 December 2005.
SUBJECT: Your Press Release of 01-Dec-2005: ‘Group on Scientific
Research into M.E.’


Dear Dr Gibson,

I was extremely alarmed to read the contents of your press release of
1st December 2005. Neither myself nor Jeff Brown, chairman of East
Anglia ME Patients Partnership, were sent this press release direct or
informed of its contents. I must say that this surprises me given our
recent meeting with you on November 4th. In the interests of
transparency and fair play, I am copying this e-mail to various M.E.
activist web lists and to the individuals specified below. I am also
publishing the text of my letter to you of 6th October 2005 (with
personal information removed for reasons of privacy).

At our meeting on 28th July 2005, attended by Professor Malcolm Hooper
and members of East Anglia ME Patients Partnership and ME Support
Norfolk, you took us all by surprise with your announcement that there
should be a "definitive" and acceptably "independent" Parliamentary
Inquiry into Myalgic Encephalomyelitis and that you would work to
establish this. You subsequently stated on BBC Radio Norfolk on 4th
August, that: "we really do need to have a proper open inquiry where
independence with open minds look at the condition [sic]." However, what
you proposed in your press release of 1st December 2005, falls far short
of your proposed "independent" and "definitive" inquiry and it cannot
possibly get, as you said, "to the bottom of things" regarding ME.

I am compelled therefore, to boycott your "Group on scientific research
into ME" that you have substituted for a proper, and promised,
broad-ranging inquiry. I feel disappointed and let down and, as things
stand, I will personally recommend that the entire ME community of
patients, carers, clinicians and researchers also boycott your group for
the following fundamental reasons:

1. YOUR BIAS TOWARDS THE 2002 CMO'S REPORT:
In your press release you have stated:
"The Chief Medical officers report into CFS/ME represented an important
step in Government's recognition of the seriousness of ME..."
This however is an extremely controversial statement and indicates
either establishment bias on your part, or that you have not read the
extensive documentary evidence supplied to you on this matter.

To reiterate, Myalgic Encephalomyelitis has been in the medical
literature since the 1930s and officially recognised by the World Health
Organisation as an organic neurological disorder since 1969. As a
signatory to the WHO charter and adopter of its International
Classification of Diseases, the UK government has in fact officially
recognised the seriousness of ME since 1969. Only in recent years has it
sought to quietly backtrack from this position.

Dr Bruce Carruthers however, eminent and respected leader of the
international expert panel on ME, has warned of the dangers of
single-paradigm lobby groups ignoring evidence for reasons of vested
interest (see documentation previously supplied). The rapid growth in ME
patient numbers and consequent financial burden from the 1980s led many
insurance companies and government departments worldwide to favour such
a science-ignoring group (e.g. "Wessely-School" psychiatrists) as a
means to save money. Sir Liam Donaldson's so-called "Working Group on
M.E." needs to be seen in this context. Not only did this group grossly
over-represent Wessely School psychiatrists and their supporters, it
systematically excluded biomedical evidence and expertise (see copious
evidence previously supplied). This CMO's Working Party also effectively
recommended that a complex group of a long-recognised multi-system
physically ill patients be denied the specialist physical investigation
they require and be mistreated as one homogeneous group of "fatigue"
patients (see previously supplied paper, amongst others, by Professor
Leonard Jason - entitled: Chronic Fatigue Syndrome: The Need for
Subtypes - on the folly of this approach). It also cleared the way for
the Establishment/MRC to put all its eggs into the vested-interest
psychiatric paradigm. A minority paradigm group that apparently
functions solely on the basis of ignoring biomedical research evidence
and using fraudulent inclusion/exclusion research criteria - as
evidenced by the current Wessely School/MRC "PACE Trial into M.E." That
the Wessely-School has been likened more to a proselytising cult than a
serious scientific research group has been well documented and much of
that documentation has already been supplied to you. Indeed, Professor
Simon Wessely himself was rebuked by the World Health Organisation for
fraudulently misrepresenting their listing/categorisation of ME/CFS (see
evidence previously supplied).

Far from being, as you say, "an important step in Government's
recognition of the seriousness of ME", Sir Liam Donaldson's report is
widely held (by the informed ME community) to have done the opposite.
Recently, Sir Liam said he thought of resigning over the Government's
inaction on smoking policy. In my view this should not have been an
issue for him, because he should have been sacked for his unprofessional
behaviour regarding his disgraceful so-called working group on ME. He
allowed the membership of his group to be stacked and biased. He
presided over a situation where biomedical evidence was excluded and
disallowed whilst at the same time admitting copious amounts of highly
questionable psychiatric research - much of which had not even been
peer-reviewed let alone published. The final report to which Sir Liam
gladly put his name was a one-sided travesty of science and justice. The
unscientific and politically driven bandwagon that this whole sorry
episode has encouraged in official UK policy has caused incalculable
suffering, mistreatment and persecution of beleaguered ME sufferers. As
a direct consequence, ME sufferers have been subject to medical harm,
denied good medicine, denied proper support, denied insurance payments
and real scientific research has been officially abandoned in the UK.
The disgraceful inclusion/exclusion criteria of the Government/MRC
backed Wessely-School "PACE Trial into ME/CFS" is an affront to the
scientific method of which any first year medical/research student would
be rightly appalled. Added to this, the Government/Establishment has
even had the temerity to begin setting up a network of regional
psychiatric-based 'ME treatment' clinics before the fraudulent fig-leaf
of the 'Pace Trial' findings are even in place - putting the proverbial
cart before the sham horse. This is a maladministrative and medical
disgrace.

For you to begin a supposedly independent inquiry process into ME by
favouring the highly controversial CMO's report, will ring many alarm
bells amongst informed ME sufferers, carers and biomedical clinicians
and researchers. You are either favouring one side of a highly
contentious dispute or, have not followed the plot. Please would you let
me know which it is? Perhaps you could also begin by letting us know why
this disgraceful working group was in fact subject to the Official
Secrets Act - are ME patients a threat to national security? Why not go
the whole hog and find out why so much of the biomedical evidence
supplied to the Establishment/Parliament went missing?

2. BACKPEDALING ON THE TERMS OF REFERENCE:
The terms of reference you have now set your group will singularly fail
to "get to the bottom of things" (as you previously stated was your
purpose). Indeed, the newly announced and surprising narrowness of your
inquiry remit – which came as a complete shock to me - will serve the
cause of the minority Wessely psychiatric school and its backers.

As you only intend to assess "progress of research... since the
publication of the Chief Medical Officer's Working Group Report into
CFS/ME in 2002" you thereby limit yourself to a time when minority
psychiatric research has dominated and received exclusive favour and
funding from official quarters in the UK. The majority of biomedical
research and accumulated clinical evidence was gathered prior to 2002
yet you will completely ignore it! Such an arbitrary cut-off point is
completely unwarranted and a travesty of justice. There is simply no
excuse for this given the copious amounts of information supplied to you
on the subject.

Also, in limiting your group's terms of reference to looking at research
matters alone, you will sidestep the fundamental problem that is skewing
medical science in this country and has so blighted the lives of ME
sufferers. No inquiry into ME can possibly do justice to the subject if
it does not look into the past and continuing lobbying activities of the
Wessely-School group of psychiatrists, and the "Healthwatch" pressure
group and their corporate and other backers. The whole shady
revolving-door network at the DWP, MRC and other institutions along with
the clear and demonstrable bias shown by the BMJ also needs to be looked
at and taken on board (see evidence previously supplied). As I have said
to you many times, what is at issue in our ailing democracy is whether
or not science and fairness determine public policy, or if it is to be
decided by lobbying prowess of big business and those who care for
nothing other than limiting official departmental budgets and forwarding
their own career (see extensive documentation previously supplied).

3. IMPOSSIBLE EVIDENCE DEADLINES AND UNDUE HASTE:
To, on the 1^st of December, give a "deadline for written submissions of
Tuesday 20th December" to ME sufferers and their voluntary organisations
is the crass equivalent of asking a paraplegic to run 200 yards. This
puts us at a major disadvantage compared to our corporate and
psychiatric opponents and is just not fair. I specifically asked you at
our meeting on 4th November that, should you commence taking evidence
this Christmas, sufficient allowance would be made for ME sufferers
needing extra time because of their illness. You assured me that this
would be allowed for but it now appears from your press release that you
have gone back on this commitment. Indeed the whole project, as you have
set it, is restricting itself to an impossible time frame. It is simply
not credible to have a thorough and "definitive" inquiry conclude by
"Easter 2006" without sufficient human resources - as there is far too
much reading and interviewing needing to be done. I was hoping to hear
from you that you had significantly broadened the membership of your
inquiry panel. However, as I have not heard from you, I can only
conclude that you have not managed to do this and are therefore
proceeding with undue haste given the human resources at your disposal.

4. FAIRNESS AND TRANSPARENCY WITH GROUP/INQUIRY MEMBERSHIP:
You have previously stated to me that you were considering Dr Richard
Taylor MP, David Taylor MP, Ann Cryer MP, and Dr Des Turner MP as
members of an inquiry panel. However, as far as I am aware, you have
made no public announcement as to the final membership selected. You
make no mention of the panel membership in your press release of 1st
December and, to my knowledge, you do not do so in written
representations made to the witnesses you have selected - to my
surprise, I have not been sent a copy of any of these written
representations and have to base my knowledge upon second-hand accounts.
It is standard practice for inquiries to formally name the chairman,
panel members, support staff and to declare all possible conflicts of
interest. That you are apparently asking the ME community to furnish
evidence to an unknown inquiry panel, without any knowledge of possible
conflicts of interest, simply beggars belief. This is particularly
unfair given that the ME community are victims of serial establishment
stitch-ups.

It has been repeatedly stated by Professor Hooper, myself and others,
that to be effective, the proposed inquiry should include a judge or QC
in its membership - to facilitate adequate cross-examination of
witnesses and rigour of procedure. To date you have both ruled this out
and then retracted. We still however do not have a definitive answer on
this question. Please advise.

I have strongly objected to the inclusion of members of the All Party
Parliamentary Group on ME (APPG), and current chairman Dr Des Turner MP
in particular, on your panel of inquiry. Under the chairmanship of Tony
Wright MP, the APPG has been the subject of many complaints for the fact
that it has given undue favour to supporters of the psychiatric school,
for giving a highly improper responsibility for secretarial services to
the vested interests of AfME/MEA, and for excluding all biomedical
interests and other UK ME organisations from its proceedings. Many
complaints have been, and are, the subject of the attention of Sir
Philip Mawer, Parliamentary Commissioner for Standards. Such disgraceful
and biased behaviour of the APPG appears to have taken place with the
co-operation of Des Turner MP as an ordinary member (since 1999) and,
has clearly continued since his appointment as group chairman this
summer. In spite of this, and in spite of my own protestations, you
still seemed fairly determined to include Dr Turner on your panel and I
have still, to date, not heard of your final decision on this matter.
You claimed that, in spite of his record with the APPG and the
Sussex/Kent CFS Group (which has a long association with Professor Peter
White and other Wessely-School members/proponents), that Dr Turner is
not biased towards any particular view of ME. I disagree with your
assessment, as you know. However, this is not the only consideration.
With any panel of inquiry into a contentious issue it is important that
justice is not only done but that is seen to be done. Similarly, members
of a panel of inquiry must be seen to be impartial beyond reproach. The
fact that you wished to exclude Countess Margaret Mar and Michael
Meacher MP on the grounds of possible perceived partiality and yet
retain Des Turner is not acting with consistency and fairness.

As said, another problem with perception of bias, if not actual bias,
comes with your appointment of Mr Ian Woodcroft as your Group/Inquiry
administrator. Mr Woodcroft has for many years worked for Tony Wright MP
and assisted his work as chairman of the APPG. As such, Mr Woodcroft is
associated with a man who has shown considerable bias to the minority
psychiatric view of ME and whose reputation is very tainted in the view
of many M.E. activists. Whilst I myself have no evidence to question the
impartiality of Mr Woodcroft, there is, I believe you would have to
agree, inevitably going to be doubt amongst the ME community about this.
Again, I would draw your attention to the maxim that justice must not
only be done but be seen to be done.

5. FAIRNESS AND TRANSPARENCY WITH WITNESS SELECTION:
It is standard practice for panels of inquiry to announce a full list of
selected witnesses prior to commencement of evidence taking. Clearly,
this is done to ensure that no one group is given undue favour in terms
of the amount of time it has before the inquiry panel. Given that, in
the UK, there is a long and dirty history of the establishment listening
to a minority psychiatric cabal to the exclusion of all others, it is
particularly vital that there is a fully transparent and balanced
witness selection process open to comment before any inquiry begins.
That you have apparently chosen not to do this, again, simply beggars
belief.

Not only has the minority psychiatric Wessely-School been grossly
over-represented compared to other professional opinion in the UK, the
same over-representation has occurred in the case of the two
establishment-favoured charities ‘Action for ME’ (AfME) and the ‘M.E.
Association’ (MEA) - often occurring along with the exclusion of other
patients' organisations. AfME and the MEA in fact represent only a
minority of UK ME sufferers and it is important that they are not
allowed to pretend otherwise. Indeed, it is my view that these charities
only have the number of members they do by withholding vital information
from them and limiting open debate - as any cursory comparison of their
literature with that of various UK ME activist groups will reveal. Thus
for example, most AfME and MEA members will not even know who Professor
Malcolm Hooper is in spite of him being probably the most respected ME
patient campaigner and defender in the country.

As I have also pointed out, the two so-called medical advisers to
AfME/MEA, Tony Pinching and Charles Shepherd, are far from being the
leading experts on treating M.E. patients. Not only should your
committee of inquiry take this on board when considering their
over-vaunted pronouncements, I believe it to be vital that their
personal relationships with their long-standing "Healthwatch"
(corporate-backed pressure group) psychiatrist colleague Simon Wessely
be fully exposed (see evidence previously supplied).

As for Charles Shepherd's claim to be working in the best interests of
Myalgic Encephalomyelitis sufferers, this is, in my view, tenuous. I am
not alone in this view. His attacks upon the work of Professor Malcolm
Hooper are a matter of public record (see evidence previously supplied).
There is also, for example, evidence that Dr Shepherd argued against
full biomedical testing of patients in his time at the CMO's Working
Group - and thereby did an appalling disservice to those he is supposed
to assist. To add to this injury, in spite of there being good evidence
to support the use of the term ‘myelitis’ in M.E. patients, this man has
taken it upon himself to replace the WHO-recognized term 'Myalgic
Encephalomyelitis' with a completely unrecognised and inappropriate
label of 'Myalgic Encephalopathy' - a label that facilitates psychiatric
interpretations of the illness. This label not only removes the
protection that the WHO-listing gives to patients, it also greatly
assists those insurance companies who seek to deny patients legitimate
disability payments. Indeed, on this precise matter of labeling, I would
refer you to the words of a REAL, and internationally respected,
clinical ME expert, Dr Bruce M Carruthers, who stated: "the politics
around this are horrendous, and the motive for any name change would
seem to have less than the good of mankind at heart. I would not favour
any kind of name change, since -itis is well established in the name ME,
and there is no good reason for changing it, since -opathy would not
reduce our state of ignorance re ME but serve to further confuse
everyone - perhaps that is one of the motives behind the suggestion."
[Email from Dr Carruthers to me, with permission to publish, April 2005].

In the case of AfME, whose chairman, Chris Clark, has been clearly
witnessed publicly stating his belief in the psychiatric explanation of
ME, the fact that the merger with WestCare now brings a clear conflict
of interest, needs to be thoroughly examined. WestCare are providers of
the CBT/GET ‘treatments’ favoured by the psychiatric Wessely-School.
Accusations that AfME chose to suppress the findings of an internal
survey of its own membership, which revealed that GET (Graded Exercise
Therapy) had proved positively harmful, are scandalous and ripe for
urgent investigation (see evidence previously supplied).

Another factor regarding witness selection - and pointed out to you by
me more than once - concerns your intention to take evidence from
‘ordinary ME sufferers with no interest in illness politics’. As said,
how do you intend to ensure that you will in fact be interviewing
genuine ICD-10-G93.3 neurological ME patients as opposed to F.48
idiopathic ‘fatigue’ sufferers? This is not a rhetorical question; it is
a fundamental problem facing your panel of inquiry and is crucially
important - as the WHO listing (and previously supplied papers by
professors Leonard Jason, Hooper et al) rightly points out. A common
symptom of ‘fatigue’ in patients is not a marker of a common pathology;
evidence furnished to your inquiry by a heterogeneous group of patient
witnesses will therefore be conflicting and misleading. This fudging of
disparate patient group boundaries is a central and growing problem in
the ME world, and is clearly identified by Dr Bruce Carruthers,
Professor Hooper and many others (see extensive evidence previously
supplied). Indeed, many have commented that such dubious criteria
fudging has been, and is, a deliberate tactic of the psychiatric school
and its backers. Not least, as said, in the MRC/Wessely-sponsored "PACE
Trial" and much other so-called ‘research’ of this ilk (see extensive
evidence previously supplied). Do you therefore propose to employ the
internationally respected "Canadian Diagnostic Criteria" or some other
erudite means of ensuring that your patient witnesses actually do have
true Myalgic Encephalomyelitis as defined by the WHO?

We also need to be sure that appropriate expert witnesses will be
invited from around the world. Like the illness itself, clinical and
research expertise transcends international boundaries. It would
therefore be quite improper to limit professional consultations to a
highly skewed UK medical and research establishment. The likes of
Canada's Dr Byron Hyde and Bruce Carruthers and many more simply must be
given the proper time and opportunity to go on the record. And, as said,
the ME community needs to be guaranteed that this will be the case
before it can decide whether or not it wishes to cooperate with your
Group/Inquiry.

6. IN CONCLUSION:
In summary, judging from your press release of 1st December 2005, you
are proposing that the ME community submit evidence to a less than
competent, highly restricted in remit, over-hasty, under-resourced and
less than transparent inquiry process. I know that you have put a lot of
work into this but I have to say that what you propose in your press
release falls far short of what was stated and promised this summer.
Essentially, you are asking the ME community to act in haste and place
blind trust in you and your unknown team to investigate within highly
narrow terms of reference. This, in my view, is far too much to ask and
I simply cannot support your endeavours in their current form and have
to recommend to the ME community that they do not do so either. I must
say, that I am highly disappointed with your press release and apparent
proposals. I am however, as you well know, grateful for any genuine
efforts to assist poor, under-supported, mistreated and beleaguered ME
sufferers - and have not given up hope that you will reconsider and
suitably modify your proposals. Please do.

Unfortunately, what you have proposed in your press release has the
potential to do more harm than good. If it is simply the case that you
have not been able to marshal sufficient resources to do the job you
initially envisaged, I would rather that you abandon your current
proposals and help the ME community to press for the proper and full
inquiry it deserves. For too long ME patients have been denied justice
and human rights that they rightly deserve in a supposedly democratic
country. It is not enough for ME patients to accept a few half-baked
crumbs when we have been robbed of a whole cake. For the UK
establishment to persecute seriously ill individuals on the basis of
vested interest, restricted evidence and fraudulent science, as is
currently the case, is nothing short of a national scandal. If
Parliament cannot bring itself to properly expose such a scandal and
call the government and its departments to account, as is its duty, then
it has become nothing more than a neutered poodle of power and money -
and is enough to make the likes of Keir Hardie and Nye Bevan role in
their graves. Frankly, I have become very weary of the long-fruitless
task of going cap-in-hand to various organs of the establishment for
pitiful and chimerical droplets of justice. I know that we need more ME
research but there is already loads of the stuff pointing to the
bio-medical nature of Myalgic Encephalomyelitis that is simply, and
crassly, ignored. I think that ME sufferers/carers need to, above all,
now concentrate on raising resources for class legal actions: for
medical negligence/mistreatment (through the UK courts), and for
Government maladministration and denial of rights (through The European
Court of Human Rights).

Thank you for your attention to this matter.

Yours sincerely,
Kevin Short.


(Note: this text will be sent to you at the House of Commons via email
and on paper by 1^st class Royal mail recorded delivery).

Cc: Professor Malcolm Hooper, Bishop Graham of Norwich, Dr Byron M Hyde,
Dr Bruce Carruthers, Dr Abhijit Chaudhuri, Paul Davis (RiME), Martin
Walker, Simon Lawrence (25% ME Group), Dr Vance Spence (MERGE), Margaret
Williams, Jeff Brown (East Anglia ME Patient Partnership), Mr Ian Woodcroft.

Enclosure (1) below:

Sent Recorded Delivery

6^th October 2005

Dr Ian Gibson MP
The Constituency Office
2 Castle Mall
Castle Meadow
Norwich NR1 3DD


Dear Dr Gibson,

*_Concerns Re Proposed Parliamentary Inquiry into Myalgic
Encephalomyelitis _*

*_ _*At our meeting on 28th July, attended by Professor Malcolm Hooper
and others, you agreed to call for a Parliamentary Inquiry into Myalgic
Encephalomyelitis. You have said it should be both "definitive” and
acceptably “independent”. To quote your BBC Radio Norfolk statement on
August 4th: "we really do need to have a proper open inquiry, where
independence with open minds look at the condition [sic]." Regarding
this however, Ms XXXXXX XXXXXX, an ME sufferer from Kent, recently
forwarded to me the text of a written reply you sent to her concerning
your proposals. Aspects of your reply concern me, including the fact
that I should hear of your intended local Norwich Inquiry indirectly
from someone in Kent. I have therefore pasted below the text supplied by
Ms XXXXXX and would appreciate it if you would comment, clarify and
answer questions that follow:

*/“/**/Thank you for your recent letter. Since I have raised this issue
in the media I have been contacted by many people with different
viewpoints from all over the country. It is clear that it is high time
there was a definitive inquiry. In /**/Norwich/**/ I intend to have a
local inquiry before the national investigation gets going. This is in
order that the experiences, voices and opinions of people like yourself
who are directly affected by ME can be included in the debate. Not just
all the powerful experts. I will add your letter and requests to my
dossier and keep you informed of any major developments as they
unfold./**/”/**//*

1. Please would you tell me if you are specifically working to establish
a national independent inquiry, as promised, or if it has been put on
hold pending your proposed local inquiry?

2. If you are working to establish a national independent inquiry,
please would you summarize what progress you have made, whom you propose
should sit on it and if a “by the end of the year” start date is still
your aim?

3. The whole point of having a definitive independent inquiry to my mind
is to ensure that as many expert voices from around the world willing to
participate are properly listened to. The problem in the UK is that
biomedical expertise has been systematically excluded from establishment
deliberations on ME with the whole process instead dominated by the
science-ignoring ‘Wessely School’ psychiatrists (see extensive evidence
previously supplied). Do you accept that a broad range of international
clinical and scientific expertise, including from the likes of Canada’s
Dr Bruce Carruthers and Dr Byron Hyde, needs to be fully consulted as a
necessary condition to any Inquiry being regarded as "definitive"?

Whilst it is understandable and desirable for you to consult with local
ME sufferers; formalising such a process into a "local inquiry" is, in
my view, not a good idea and is _not_ what was agreed at our meeting on
July 28th. The problem with just consulting ME patients, is that most of
them are too ill to be aware of the biomedical research and dirty
political subtleties surrounding their illness. Indeed, how will you
know that you are in fact talking to true ICD-10 G93.3 neurological ‘ME
patients’ when a central problem in this country is that diagnostic
criteria have been deliberately muddied for political ends and proper
biomedical testing has been abandoned (see extensive evidence previously
supplied). Also, talking to clinical practitioners in one particular
locale does not remotely guarantee a complete and up to date medical
picture. To get, as you say, "to the bottom of things" will require wide
consultation that is not confined to any particular interest/sub group
or locality. You also talk to Ms XXXXXX of “powerful experts”- which
seems to indicate a fundamental misunderstanding on your part; The
problem in the UK is that all ‘power’ was taken away from the biomedical
clinical & research experts and given to a single corporate-backed
_non-expert_ psychiatric lobby - that ignores research and has clear
conflicts of interest. I am very grateful indeed for your time, and for
any genuine efforts to seek justice and the scientific & medical
excellence that beleaguered ME sufferers should, in a democracy, have by
right. I look forward to your early reply.

Yours sincerely,
_Kevin Short._

Cc: Professor Malcolm Hooper, Jeff Brown (Chairman, East Anglia ME
Patients' Partnership).