Action for ME and the fatigue clinics (UK)

Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 1, 2006.

  1. tansy

    tansy New Member

    80% of an AfME survey said the clinics were a good thing....



    Hello there,



    I have seen a couple of e-mails recently - one in particular extolling the virtues of Professor Pinching from another one of his patients who now seems to idolise him - hardly an objective assessment then....



    In sticking up for Professor Pinching and the "CFS/ME" "Fatigue" Clinics the correspondent cites a recent survey where 80% of attendees state that they were satisfied with the service provided to them.



    And in the next breath the correspondent states.... this survey was published in no less than InterAction - the publication of Action for ME who as we know are bank-rolled by the Department of Health who have given them hundreds of thousands of pounds in grants to set up these clinics based on the AfME/Westcare model with the sole aim of dishing out mental health treatments and graded exercise and nothing more.



    So my comment would be... well they would wouldn't they!



    Of course they do not mention that they themselves or indeed Action for ME do not represent the whole ME community by far and they do not say if those attending these clinics accurately represent in any way shape or form those people who have the specific signs and symptoms of ICD10-G93.3 Myalgic Encephalomyelitis.



    The fact is that this 80% figure of individuals do not present to these “Fatigue” Clinics with the specific signs and symptoms of G93.3 Myalgic Encephalomyelitis so in effect these statistics are akin to the statistics used in TV commercials for things like pet food i.e.....



    "8 out of 10 owners said their cats preferred it."



    This is all a part of the propaganda we have come to expect from Action for ME and from its supporters...



    AfME is the Government's Friend doing whatever the Government tells it to do in association with the MRC who are themselves overseen by Lord Sainsbury - a close friend of Tony Blair and the New Labour Project.



    With regards to the New Labour Project, one of the biggest reforms of this Parliament is that of Benefit Reform.



    Tony Blair announced in the House of Commons last year that there would be a drastic increase in the use of Cognitive Behavioural Therapy and allied techniques to get people on Incapacity Benefit off of their benefit and back to employment.



    To anyone with ME this idea will seem very familiar thanks to the network of "CFS/ME" "Fatigue" Clinics who are using CBT and Graded Exercise to resolve what Somatoform Psychiatry believe to be medically unexplained symptoms (regardless of any evidence to the contrary) wrapped up in a Functional Somatoform Syndrome that includes what they refer to as CFS(ME).



    Indeed looking further into the mire people reading this might also like to look at PRISMA Health and their "resolution programmes" to effectively treat and resolve conditions such as Chronic Fatigue Syndrome thus enabling patients to get off of benefits and back to work. Those who do not already know - Professor Simon Wessely is a medical advisor to this organisation.



    See Also:



    http://www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTEREST.htm



    And as far as Professor Pinching goes..... he may well do a good job for the very few patients he sees personally but his patients are only a tiny minority.



    The vast majority of "CFS/ME" patients are almost certainly seen by intentionally vague (but to the ignorant impressively sounding) “multidisciplinary teams” at "Fatigue" clinics set up using the Functional Psycho-Somatoform Disorder model and an ideology handed down to them by their puppet masters in the form of Wessely/Sharpe/White/Chalder et al.



    As we have already seen here on MEActionUK - the majority of these clinics have people running them who do what they do based on their interests in Somatoform Psychiatry even if they are not psychiatrists themselves.



    So as others have already said here - the vast majority will not get the kind of non-psychiatrically biased assessments that Professor Pinching gives his own minority.



    The vast majority will be treated as though they have mental health disorders of which fatigue and non-specific pain are key treatable symptom using CBT and Graded Exercise Therapy.



    And then there is the whole policy agenda of Action for ME.... of which Professor Pinching is allegedly it's Medical Director - a pro-psychiatry agenda to the very core of its being with it's polices on best practice “treatments” firmly set by Wessely/Sharpe and White who repeatedly claim to their peers that "CFS/ME" is a psychiatric disorder identical to Neurasthenia.



    Those who know what is going on are fed up of those who are acting as apologists for Professor Pinching, Action for ME and these "Fatigue" Clinics - fatally flawed by their mental health agenda at the expense of any other treatment methodologies like those advocated by Dr Sarah Myhill (see link below),



    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0607d&L=co-cure&T=0&P=4494



    Dr Kerr, Dr Gow, Dr Weir along with all the many other knowledgeable people including those working at ME Research UK, Professor Malcolm Hooper, Eileen Marshall, Margaret Williams and the many others who agree with them and see the CBT/GET “Fatigue” Clinics project as a total waste of money and time for the G93.3 ME community.



    This whole project is quite clearly just a money making exercise for everyone involved in running these clinics for anyone suffering from idiopathic "Fatigue" as defined by Psychiatrists. What we see is also making heaps of cash for those like minded Psychiatrists running the ideologically flawed PACE and FINE trials as set up by the Medical Research Council and supported to the N’th degree by Action for ME and the Department of Health.



    As Alex Fergusson MSP stated in the Scottish parliament debate just over a year ago....



    http://www.meactionuk.org.uk/Scottish_Parliament_Debate.htm



    If the genetic work of Dr Gow and Dr Kerr was brought to fruition - all the steps currently being carried out i.e. the present agenda of "Fatigue" Clinics, CBT and GET..... would be completely unnecessary.



    In my view it is for exactly this very reason that the Medical Research Council and Action for ME are declining to help fund any research that would make their whole project obsolete.



    This is a sad and sorry mess that should be condemned by everyone who sees the bigger picture of what is going on and for what it really is.



    Thus far sod all has been done of any substance to fundamentally change the lot of the genuine and long suffering ME community.



    However, research will eventually make that change and to carry out the research needed – those doing the research need money and support.



    So those who have the money and those who can give support have to put that money and that support where it is rightfully needed.



    In my view change will only happen when the Soft Pseudo Science of Somatoform Psychiatry has its funding taken away.



    Things will really change when that funding is redirected to the hard science disciplines of medicine (all of whom you can find details of in this web site) who have already shown significant interests in Myalgic Encephalomyelitis.



    Whilst a corrupt Medical Research Council controls who gets the money and when - nothing will change.



    Whilst lobotomised ME charities such as Action for ME do nothing more than support the agenda set by Somatoform Psychiatry - nothing will change.



    But having said that things will change in the very long term because although good biological and genetic research into ME is being deliberately starved of funding by the MRC and substantial support by Action for ME, there is a small concerted trickle of funding and support from the independent sector that one day will make a fundamental difference for people with ME..



    But how many more people will have died of complications due to Myalgic Encephalomyelitis before that day comes?



    http://www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm



    Regards,



    Stephen Ralph DCR(R) Retired.

    [This Message was Edited on 08/01/2006]
  2. STML

    STML New Member


    This article,though most likely veru true and researched as i know abotu dr. gerr, etc. and the genetic link 'feels' instinctly right, has in fact scared me a little as i'm just being put through to one of these clinics and am now slightly worried - i thought m.e. had been accepted by the MRC as physical, am i going to get psycho-analysed, pushed beyond my limits,
    please help me understand bit more if can, thanksx
  3. Tantallon

    Tantallon New Member

    I never knew that about Action for ME, but I do now. One day they will be proved wrong, and it can't come too soon for me.
  4. tansy

    tansy New Member

    PERMISSION TO REPOST


    Campaigning for Research into Myalgic Encephalomyelitis

    RiME



    Summary of July 20 APPG Meeting
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~



    The main item was the drafting of the DWP Guidelines which are
    set out in the Disability Handbook. Dr Shepherd reported on the
    meeting that morning between the DWP and a 'Working Group'
    (WG) which included representatives from MEA and AfME:


    The process had been going on for about a year

    The draft document of Oct. 2005 was totally
    unacceptable

    Dr Pinching had acted as a mediator between the
    DWP and the 'ME WG' > revision and Draft 8 2006

    The new draft had been viewed by the WG and
    rejected


    One of the points raised by the WG was whether the DWP
    accepts the G.93.3 WHO Classification of ME as a neurological
    disorder. It never got a clear response, the DWP saying 'it's a
    statistic not a clinical practise matter'. Related to this, the WG
    feels the DWP Guidelines fail to address the physical effects ME
    has on a person, especially the severely affected.

    Dr Henderson (Medical Advisor to DWP) said she would take
    the document back to the 'DWP Writing Group' with the WG's
    comments

    Shepherd felt that although there may be some alterations the
    overall message will be the same.



    Dr Turner (APPG Chair) said the discussion of the DWP
    Guidelines will continue at the next APPG meeting. Those
    involved should get their opinions on paper and put them to John
    Hutton DWP Secretary of State.

    Ciaran Farrell expressed concern that the ME Charities were
    failing to distinguish between the Disability Handbook - it sets
    out the Guidelines which outline the illness and its effects - and
    The Decision Makers Guide (DMG), which is used by DWP
    Adjudication Officers who are now known as Decision Makers
    and who make decisions within the DWP on claimants'
    entitlement to benefit. Both can be referred to when making a
    decision and both need to be revised re. ME's status.

    Ciaran pointed out (1) That in an early draft of the current
    revision of the Disability Handbook it stated it was law that
    CFS/ME has both a physical and a psychological component;
    this is not true, as this conceptualisation of CFS/ME in DWP
    arises from the DMG which has the status of internal DWP policy
    (2) That there have been commissioners' decisions favourable
    to ME; these should serve as case precedents and could be
    used to revise the DMG and the Disability Handbook to the
    advantage of PWME.

    Ciaran's points are very valid and the fact the ME Charities fail
    to see their importance is both disturbing and remiss. The
    Disability Handbook is also used by people such as Disability
    Employment Advisors who work in Job Centres.

    If the ME Charities expect the DWP to acknowledge and accept
    the WHO Code, why didn't they do the same re. the CMO
    Report? Because they misguidedly signed up to a report which
    does not recognise ME to be a physical illness, future efforts to
    tackle issues such as this will always become an exercise in
    damage limitation. The situation is complicated further in that Dr.
    Shepherd is the Medical Director of an organisation (MEA)
    which has -opathy and not -itis in its title, thus flouting the G93.3
    Code.

    There are concerns, thus, as to whether the WG is on top of its
    brief. And it would appear that the ME community might have to
    resign themselves to another failure - one which could have
    serious ramifications for us all.



    AGM: Since there were only two MPs there (Des Turner and
    Celia Barlow, both Patrons of the Sussex Group,) the meeting
    and hence the AGM were not quorate. The Group, therefore,
    would appear to have no constitutionally elected officers and one
    wonders if it can continue?



    NHS Clinics: Trish Taylor AfME reported that funding might run
    out in some areas.


    Paul Davis (RiME) said that the issue to the 'front bench' was not
    patient perception ie do ME patients want them but funding ie
    they must be saved. Paul brought people's attention to a dossier
    he had with him. It contained a selection of 34 letters from
    around the British Isles which condemned the Clinics. He
    presented this to the Chair. Primary concerns were (1) That the
    treatment was 'same old, same old...' - essentially of a
    psychiatric/psychological nature (2) That admittance criteria was
    too broad > people with a whole range of conditions being
    admitted > skewed and misleading results. Paul said that if MPs
    thought that ME patients were being 'treated' at the clinics, they
    could turn off re. biomedical research.

    When Paul specifically mentioned opposition to the Kent clinics,
    holding up a copy of the Maidstone Newsletter, the Director of
    the Sussex Group said, 'There are thousands? (with what - ed?)
    of patients who are helped by these centres and you do them an
    injustice... ' Paul said, 'I don't think so' (Paul was talking from the
    context of neurological ICD-ME) and pointed out the treatment
    was still essentially 'Wessely Psychiatry'. Shepherd tried to
    dismiss this saying Lesley Findlay was involved. This doesn't
    alter the reality that the treatment described in the relevant leaflet
    is 'Wessely-Chalder' style. Patients are referred to the King's
    College website and Chalder's book, Coping with Chronic
    Fatigue, prefaced by Wessely. Members of the Maidstone
    Group are boycotting the centres.

    Paul went on to ask a question about research in conjunction
    with the Chair mentioning that the Director of the MRC had
    addressed the last meeting: 'The MRC is not the only Govt
    agency to fund medical research; the Health Dept has a
    Research and Development Fund - had the APPG approached
    the Health Dept re. this fund being used to research the physical
    causes of ME'. Dr Turner's response: things were happening on
    that front, referring specifically to the Gibson Inquiry. But we don't
    know at this stage how the Gibson Inquiry will report. If it did
    recommend that the Govt invest money in ME biomedical
    research, it has no powers to implement such a
    recommendation. And is there not every likelihood that the Govt
    would ignore the recommendation as it has recent patients
    initiatives on the subject? The reply given by Dr Turner, together
    with the poor attendance of the APPG's AGM, raises the
    question: has Dr Gibson's Group superseded the APPG?

    Ian McLachlan



    Paul Davis - Thanks to Ian for writing the above.

    I am going to limit myself to a few comments re. the clinics:

    With the exception of one recent communication, we get nothing
    but complaints about them. The issue which features relentlessly
    is nomenclature: That because admittance criteria is so broad,
    patients with a whole range of conditions will attend > skewed
    and inaccurate results...

    One might arrive at a situation where the Govt reports that
    60,70%... of 'CFS/ME' patients are being successfully treated. If
    so, such misleading results would have a range of
    consequences. Let's look at two:

    1. MPs might well think that since such a high number of
    'CFS/ME' patients were being 'treated', is there a need for
    biomedical research?

    2. Attendance of clinics might be connected to benefits. Govt
    Ministers seem desperate, currently, to get people off ICB and
    into work, and CBT has been specifically mentioned in that
    respect. Might one reach a scenario where some ME patients
    were requested to attend: the penalty if they didn't - their ICB
    would be capped?

    To the few who dogmatically insist that the clinics are helping
    PWME per se, some say (a) do they have neurological ICD-ME
    or understand what it is? (b) have they considered the wider
    implications for PWME?



    Following the July 20 meeting, the Medical Adviser to the MEA
    and the leader of the Sussex group got on the 'net and accused
    Ciaran and I of acting aggressively. This was not the case.
    People who both attended the meeting and have listened to the
    tape ie Ian rebut the allegations as baseless. That the above
    would choose to launch these personal attacks is both
    disappointing and sad. I think it says something about them...
    Rest assured, RiME will not sink to this level and get embroiled
    in pointless feuds or vendettas.

    RiME will stick to the job in hand (1) putting info. in the public
    domain (2) representing people with neurological ICD Canadian
    ME as best it can. With this in mind, RiME will shortly:

    A. Write to Dr Shepherd MEA and Trish Taylor AfME in a
    detailed way re. their perceived support for the Kent Clinics.
    These letters will be put in the public domain.

    B. Publish 'NHS 'CFS/ME' Centres Condemend Part 4 - another
    8 letters, which were in the dossier presented to Dr Turner July
    20.



    Good Wishes, Paul



    RiME 10 Carters Hill Close Mottingham SE9 4RS
  5. Smiffy

    Smiffy Member

    The treatment of M.E. patients in this country is scandalous.

    The people who most need treatment, the 25% of sufferers who are severely affected, cannot even travel to these useless clinics. We are just completely ignored.
  6. Roseblossom

    Roseblossom Member

    Tansy, I've been reading your posts about this scandal with great interest. Please carry on.

    There's a special circle of hell for those who are profiting from these clinics. Professor Weasel, Dr Pinching et all should be barred from practice.

    And, for the record - 8 out of 10 cats hate these clinics, as they have seen first-hand how much worse it makes their loved ones suffering from ME/CFIDS/CFS!

    STML, please post about your experiences with this.

    Best,

    Roseblossom

  7. STML

    STML New Member

    will be sure to comment on my experience, went to the doctors for some final physical tests after having blood tests done for the clinic (of course they showed nothing. the doctor measured my blood pressure, pulse, asked what i am able to do physically, checked my eyes and then did the whole squeeze my fingers, push against me away from me, etc- muscle resistance. so am waiting to go now to clinic, am going to give it a go for my familys sake but i doubt i'll carry it on, after 5 yrs of living with this, who can know how to pace it better than me, when theres no physical evidence,

    willl post on visist to clinic,
    kepp it up tansy, etc, stmlxx
  8. tansy

    tansy New Member

    Come back normal is because they don’t do the ones that are needed. Even when PWME’s tests and exams show up abnormalities they are frequently ignored or not followed through. Activists have been campaigning for the right investigations to be done for many years, but the official advice doctors and these centres have been given is only very basic (useless) tests are required.

    The Wessely School recommended no testing on the grounds it might pander to PWME’s misguided illness beliefs. Then Prof Pinching (medical advisor @ AfME) and Dr Shepherd (medical advisor @ MEA) also pronounced that in depth investigations weren’t needed. This went on for years; no wonder Wessely et al have been laughing all the way to the bank. It’s only recently these medical advisors have stopped insisting on no in-depth testing; no doubt because ME advocates have been persistent in letting their opinions on testing and biomedical research be known.

    Thanks for giving Dr Myhill the thumbs up on another topic, she is one of the best we have in the UK. Did you read that she has resigned from her role in one of these fatigue clinics? She is not allowed the funding for tests, nor for Tx. She did not feel it was right Tx that help her private patients were not being provided through the NHS chronic fatigue centres.

    Good luck with your course. I have done a few part time courses since my illness, very difficult but rewarding too. In spite of all the cognitive issues it helped confirm I still have some intelligence (IQ) left; even if it does go into hiding most of the time.

    TC, Tansy[This Message was Edited on 08/11/2006]
  9. shelbo

    shelbo New Member

    thing? It's done me no good at all! :(
  10. tansy

    tansy New Member

    so clearly AfME is not working in your interest either.

    When you feel well enough please write to the Health Minister and your MP, they need to be kept constantly aware that most PWME are made worse by the GET used in the UK. RiME would also like to know; also the 25% group because they too are trying to get the risks of GET recognised.

    I am truly sorry this happened to you as well.

    TC, Tansy[This Message was Edited on 08/16/2006]
  11. tansy

    tansy New Member

    Action For ME's Candlelit Vigils For Fatigue Clinics

    Action For ME have asked local ME groups to join their campaign for the fatigue centres/clinics/CFS/ME coordinating centres to receive more funding.

    AfME's latest campaign includes a template letter for MPs and one for the press. They want MPs to join them in candlelight vigils to help save these centres (CNCCs) and to get celebreties involved.

    AfME's propaganda is considered to be extremely misleading. AfME, AYME, and the groups aligned with them, are the only organisations who support the CNNCs as they are currently set up.

    AfME's has provided quotes supporting these CCNCs eg the London CNCC run by Dr Peter White who is a leading figure of the Wessely School and thinks ME is a psychological illness.

    AfME have a financial interest in these clinics and refuse to acknowledge the harm their Rehabilitation is doing to PWME.

    All we can hope is that the majority of local groups are aware of AfME's vested interests and that AfME are essentially acting on their own agendas as against campaigning in the true interests of those they claim to represent.

    TC, Tansy[This Message was Edited on 08/16/2006]
  12. tansy

    tansy New Member

    PERMISSION TO REPOST

    Campaigning for Research into Myalgic Encephalomyelitis

    RiME

    On July 20 2006 I presented a dossier to Des Turner MP Chair of APPG on ME.
    It contained a selection of 34 letters from around the British Isles which
    condemn the NHS 'CFS/ME' clinics. Here are another seven, which were in it,
    from areas not previously represented.

    RiME will shortly be drafting a pro forma letter for MPs which will call for
    the funding of the clinics to cease and the money to be redirected into
    researching the physical causes of ME via the Health Dept's Research and
    Development Fund.

    All four sets of letters will be republished. And can be used, accordingly.

    HERTS: .... From 1989-94, as secretary to the Beds/Herts Group, whose
    membership averaged 450-500, I met many whose career had been suspened if
    not ended and lives ruined by the physical consequences of ME. From (a)
    listening to the experiences of members of this group (b) professional
    experience (NHS physiotherapist)... (c) personal experience of ME, I am
    convinced of the potentially damaging effects of exercise and/or
    psycho-therapeutically based management of ME.

    There is ample and irrefutable evidence... of the physical basis of ME;
    shamefully, little of this work has been done in the UK... I am disappointed
    in the way you handled my letter. Writing to x (Health Minister) and
    returning his dismal pro-forma reply was.. pointless. I and others in SW
    Herts are only too aware what the party in power is doing or should one say
    not doing re. ME.

    Would you please (1) write back to x saying that people with ME in your
    constituency condemn what the govt is doing. I think the info. enclosed says
    it all re. the scientifically flawed CMO Report. Re. the centres which are
    currently being set up, the nearest seems to be PW's clinic at Barts London.
    (I enclose one horror story of a patient who attended). Please ask x if he
    deems the treatment... to be appropriate for PWME. We also condemn the MRC
    initiatives - PACE and FINE (info. enclosed). (2) send the same message
    to... Chair and Vice-Chair of the APPG on ME.
    Do you think it shameful that the British Govt lags behind the world in
    promoting and supporting research into the physical causes of ME, so these
    patients have a chance to recover and resume a useful position in society...

    ESSEX: Dear Professor Blakemore (MRC),

    ... On 14.3.2005 I sent you a 2-page letter setting out my concerns over
    serious problems in respect of MRC-funded research into ME/CFS and your own
    role in this and related issues. I enclosed a copy of a 6-page document
    entitled 'Problems and Solutions?' by E Marshall and M Williams.

    I am astonished to find that to date I have received not even an
    acknowledgement from you, leave alone a detailed response, which I feel is
    called for considering the gravity of the situation.

    In the meantime the concerns of patients over the impending trials, the new
    clinics and in particular the methods of referral, as well as the management
    / treatment approaches to be recommended and applied at these centres, have
    continued to be aired on the Internet and elsewhere. E Marshall et al have
    documented in more detail exactly why GET, one of the main approaches in the
    PACE Trials, is potentially harmful to a significant number of ME/CFS
    patients in 'Profits before Patients?' dated 15.4.2005 (copy enclosed). That
    document has been released on the Internet and has been welcomed by patients
    around the world....

    LINCS: ... I am sure that there are plenty... who will welcome the closure
    of this service... Any loss of funding from any dept of psychiatry in
    relation to 'services' for 'CFS/ME' is just fine by me...

    SUBJECT: THREATENED CLOSURE OF: Leeds and W Yorks CFS/ME Service.

    GLOUCS: Following the... CMO's Report.. , twelve clinics are being set up
    in England. I do not share the Govt's enthusiasm re. their inception. Since
    the emphasis of the CMO Report was on psychiatric models of treatment,
    notably GE and CBT, it seems likely that the treatment offered... will
    revolve substantially around GE/CBT... these forms of treatment do not help
    the vast majority and are often even harmful. PWME would prefer to see Govt
    money spent on investigating the underlying physical causes of ME...

    The Chair of the APPG.. appears to be supporting the recommendations of the
    CMO Report and the establishment of the twelve 'CFS/ME' clinics. The nearest
    to me is listed as Bath/Bristol and run by a psychologist - Dr HO. I would
    be grateful if you write to TW and ask: What diagnostic criteria will be
    used for admitting people.. ; what exactly the treatment will be; and does
    he believe the treatment will benefit PWME? ...

    EDINBURGH: ... I support your statement that I would have preferred the
    £8.5m to be spent on physical research into a cure for ME rather than on
    researching GE and other mangement techniques. I was one of thousands of
    people who have signed petitions and written to my MP...

    GLASGOW: ... the Govt is going the wrong way in tackling this devastating
    illness.... the APPG has accepted the composite term CFS/ME which has no
    scientific basis. This means that PWME are being misrepresented by the
    Group, as the specific needs of PWME are being subsumed under the larger
    remit of wider, non-specific 'fatigue syndromes'. ME needs to be removed
    from the umbrella of CFS, and a suitable research program into the physical
    causes of ME put in place...

    The Govt is currently only putting money into treatments of 'CFS/ME'.
    Centres will be set up around the country experimenting with various
    treatments such as GE and CBT. The establishment of these centres will be
    based on the recommendations of the CMO's Report which has been widely
    condemned by ME Groups and patients... myself and others in Glasgow don't
    endorse the CMO Report on 'CFS/ME' and don't believe the new NHS Centres
    will be in the interests of the large majority with ME... please ask the
    Chair (of APPG) why the Group has not been more active in calling for the
    Govt to research the epidemiology, aetiology and pathogenesis of ME....

    DUBLIN: ... I.. hope that we do not have to deal with clinics such as
    those I have heard about in England. Running a clinic using a purely or
    predominantly psychosocial approach for people with a neurological illness
    is wholly unacceptable and no other group of neurologically ill people would
    put up with it. The treatments offered at these clinics are based on what I
    would consider to be flawed research, and if ME patients as opposed to
    fatigued/depressed/burnt out patients were listened to, then it would be
    clear that these "treatments" are ineffective at best, and more worryingly
    have been reported to be harmful.

    I don't think it is advisable to take the view that having any clinic is
    better than no clinic and if GET and CBT are what are being offered to
    people whose symptoms become worse with exercise and which no amount of
    positive thinking will eliminate, then I would advocate the closure of the
    clinics with the funding being directed towards good quality biomedical
    research.... It is time for science to be allowed to enter the ME debate and
    using a strictly defined cohort of patients (ie using the Canadian Consensus
    Document) unravel the truth about ME. Groups like ME Research UK have the
    expertise, interest and integrity to do this, but receive no state funding.
    Perhaps then clinics can be set up which will use appropriate methods, based
    on ethical and rigorous science, to improve the lives of very ill people.

    RiME 10 Carters Hill Close Mottingham SE9 4RS
    www.erythos.com/RiME