ME agenda: Position on the unofficial APPG on ME inquiry into NHS service provision for people with ME
Given an apparent lack of funding for the administration and resources to support the undertaking of an inquiry; given the APPG on ME’s failure to properly consult with the ME community (other than with the APPG on ME Secretariat) over this inquiry’s remit and before publishing its Terms of Reference; given the many concerns that were expressed to Dr Turner in October and November, last year, and the current level of concern over the Terms of Reference and the tightness of deadlines, I consider that Dr Turner should postpone taking this initiative forward until proper consultation has taken place over what the aims and objectives of any inquiry carried out in the name of the ME community should be and how the APPG on ME might best set about achieving those objectives.
In failing to recognise this inquiry’s shortcomings and in failing to acknowledge and respond to the levels of concern, our national patient organisations are failing to act in the interests of their membership and the wider ME patient community.
Action for M.E., the ME Association and our other national ME patient organisations should call jointly on Dr Turner to slam the brakes on this juggernaut by withdrawing their support for this inquiry until the problems around this initiative have been thrashed out.
In November, in response to my concerns about the inquiry, the Countess of Mar wrote that she would like to point out to me that the APPG on ME, like all APPGs, is there for the benefit of members of both Houses who wish to be informed about a particular interest and that she believed it was therefore appropriate for the Chairman and his officers to decide what subjects they wish to tackle and how they intend to proceed.
I am sure I do not need to remind the Countess that MPs are paid to represent our interests – not their own.
4 May 2009
Campaigning for Research into ME (RiME) www.rime.me.uk
NHS Services Inquiry
There is a new folder on RiME Website re. above.
Note that closing dating for ‘survey submissions’ is May 5 (Tuesday). Some have written asking what this means. Well, one can only go on what’s on the press release by Des Turner 3/4/09:
“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.
“People with ME, carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.”
A selection of comments we have received so far are below. If you haven’t yet replied, please consider doing so (and please send us copy).
Comments to firstname.lastname@example.org
“… I am concerned that in order to evaluate the CFS Clinics properly and adequately in the round it will require a great deal of work on the part of the Inquiry Team, and that insufficient thought has been given by the Inquiry as to how to handle and evaluate the volume of paperwork that will be generated by this part of the Inquiry alone.
I therefore do not see that the Timetable Tabled at the APPG meeting of the 1st of April as being workable on this particular score alone….”
“… Does the slash (/) between CFS (Chronic Fatigue syndrome) and ME (Myalgic Encephalomyelitis), CFS/ME mean “and” or does it mean “or”? That is, do you take CFS and ME to be synonymous and interchangeable? Or do you think that ME is an illness that can be subsumed under the diagnostic label, Chronic Fatigue Syndrome, which includes several other illnesses of various physical and/or psychiatric causes?
I’m sure that you can guess that veteran ME sufferers know that it is neither of these but a discrete neurological illness, named in the 1950s, recognised by the World Health Organisation (WHO) in 1969 and for which there is an abundance of physiological evidence to justify its name today.
But, if you are going to continue to bundle ME, together with an unknown number of illnesses, all of various uncertain causes, can you say how you are going to be any more likely to provide an enduring effective and safe treatment for people with ME than you can with those currently available – Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET) – which have neither of these merits and which, in too many cases, make matters worse, sometimes irrecoverably so…”
“… As a severely affected ME patient in Scotland, I feel compelled to write (1) to support ME friends in England (2) because we don’t want the English CFS Clinics north of the border.
It is evident from the RiME website and other sources that the clinics do not address the neurological illness Myalgic Encephalomyelitis. Myalgic Encephalomyelitis has been fudged with other illness/conditions resulting in (1) Myalgic Encephalomyelitis getting skewed and diluted (2) inappropriate treatments for ME patients, notably GET and CBT, which are proven to be harmful.
Until the powers to be take the issues of nomenclature and classification seriously, ME patients will continue to suffer, and be denied hope.
Any effective project has to begin by screening the biomedical research of which there is plenty. How long before the science is acknowledged Dr Turner?”
“… I think the time-scales for ME patients getting comments/evidence in are too tight.
Can I ask please who was responsible for initiating the Inquiry? Was it the APPG or did the Health Department or Government approach you to do it?
Any public Inquiry/Report into ME should begin by screening the biomedical evidence. But once again, it would appear that that evidence will be overlooked.
Instead, it will approach providers who appear to be catering for something else. Too, probably some patient organisations who do not adhere to a strict ME Code.
The APPG’s cavalier attitude to matters of nomenclature and classification will most probably, in my opinion, render the project skewed and void.
It’s not too late to change your mind Dr Turner. Ditch the Inquiry and lobby vigorously for biomedical research: what ME patients primarily want…”
“…1) TIMETABLE I am concerned that there are conflicting dates for the cut-off point for submission of written evidence.
I am also concerned that there is such a short timescale:
If questionnaires are to be prepared and distributed after the 5th May for written evidence from patients and NHS service providers….
… 3) TERMINOLOGY
…. It is agreed that to use only the precise WHO classification of ME will impede access to information from the NHS. However it has to be understood that the refusal of the NHS to provide any treatment for our neurological problems has caused much suffering for patients and their families. I personally have suffered for over twenty years.
4) FREEDOM OF INFORMATION
The UK Medical Research Council has a file on ME; it contains records and correspondence since at least 1988; the file is held in the UK Government Archive at Kew and cannot be opened until 2023.
Recently many files are being opened early. Perhaps consideration could be given to this file being opened now, if it would help resolve the suffering in this country.”
“… I am writing to you regarding the APPG Inquiry into NHS services for CFS/ME sufferers and would like to tell you of my experience.
When I first became ill and my blood tests came back negative my GP implied there was nothing wrong with me other than depression
I was ill for 4 months before being referred to a specialist and only then because I was persistent
I was diagnosed with CFS by a Consultant in Medicine only to attend a follow up appointment 2 months later and be told by the Consultant’s registrar that it was “all in my head”
I was discharged back to GP care but my GP did not want to know
I asked to be referred to my local CFS/ME clinic and had to wait 13 months for an appointment
I am now under the clinic but because they are so underfunded yet cover 2 counties in the North West I am only seen sporadically
I attended my GP on 2 occasions with groin pain and was told it was down to my CFS so go away and get on with it. I was eventually diagnosed with osteoarthritis in my hips and had been suffering for 6 months
I decided I could no longer cope with the GP surgery so had to move practices
I have been astounded by the lack of support for CFS/ME sufferers from the NHS. It really is a case of go away and get on with it yourself. As an ex-NHS employee I am more than aware of the support sufferers of other conditions get.
I also wish to point out that the World Health Organisation (WHO) classified CFS/ME as a neurological disorder in the WHO’s International Classification Of Diseases (ICD G93.3). So sufferers should not be made to feel like it is psychological and ‘all in our heads’ which seems to be the view of a lot of NHS staff…”
Leader of Kent ME Network
“… Could you confirm that the APPG on ME recognizes the definition of ME as a neurological illness under WHO G93.3?
The clinics cater for a hybrid ME/CFS and specifically exclude those with neurological illnesses, which obviously excludes those with ME.
Will the Enquiry Team be approcahing the Kent Clinics as providers, and if so, is there not a discrepancy betweent the admission criteria of the clinics and the definition of ME under G93.3?”
“… Re. the APPG on ME Inquiry into NHS Services, will you be asking the CNCC at Barts London (info. below) for evidence?
Please note (1) the patients’ leaflet is entitled ‘The Chronic Fatigue Service’ (2) the Referral Criteria says, ‘A primary complaint of unexplained fatigue’ (3) the unit offers GET and CBT.
Is this consistent with the illness described by WHO ICD G93.3 (which the APPG recognises) and Canadian Criteria?
I don’t get good reports on the clinic from ME patients.
If you were to accept evidence from this CNCC, would it not render the Inquiry defective…”
“…As leader of the NHS Services Inquiry, what consideration has been given to the large number of research papers from 24 countries all showing physical anomalies in ME patients?
If the Government is so sure ‘present treatment’ is correct and adequate why do they find it essential to hold secret files of information re. ME on UK Government archives not to be available until 2023.
A reply would be gratefully appreciated…”
“… The APPG on ME recognises the WHO ICD G93.3 Classification of ME; that is, ME is a neurological illness.
Can you explain to me, therefore, why it is taking the lead in investigating services which appear not to be about G93.3.
One example that comes to mind is the clinics in Kent. Under Section 5.4 of the admittance criteria, do they not exclude people with neurological illness?
If your inquiry was to approach the Kent Clinics as service providers, would it not render the project flawed, if not bogus?”
Worcs + Essex
“… We feel it important to bring to your attention the statement below. We would also like you to note the events that took place which led to the statement being drawn up, and the subsequent support it received from approximately five hundred members of the ME community, despite the limited time scale available. Although almost two years has now passed the same concerns mentioned within the statement are still very evident: It is clear to us from the feedback we receive, that many members of the ME community remain unhappy at the lack of decent critical appraisal from within Westminster regarding the setting up and continuation of the controversial NHS CFS/ME clinics; and also there is a belief that any Inquiry undertaken in the present climate will further endorse the psychosocial approach currently favoured as best practice…”
A Need of Accountability and a Firm Resolution
Following the events of the APPG meeting of July 12th, and the official minutes that followed, it has become clear that there is a high amount of dissatisfaction with or objection to the approaches of the majority of the NHS ‘CFS/ME’ clinics amongst the ME/CFS community, and that this fact was not properly recognised at the APPG meeting for a number of reasons. Ian and I feel that if the objections people have to these clinics are prevented from being aired and formally acknowledged, the current situation, by which the only ‘treatments’ being offered by the clinics are those psycho-social in nature, with serious physiological impairments being trivialised and/or ignored, is likely to become more and more entrenched as ‘best practice’, with disastrous results for the community on an individual and collective basis. With this in mind, it is proposed that a formal statement is delivered to the APPG, (both as written communication to the chair, and as an oral statement read out at the next APPG meeting under ‘Any Other Business) to register objections to this state of affairs. We feel it vital that people who share the same concerns should be given an opportunity to become co-signatories to the statement if they wish.
The statement will be as follows:
STATEMENT TO THE APPG
“We are a group of individual people suffering from or closely connected to someone suffering from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome; an illness classified as neurological by the World Health Organisations ICD-10 under code G93.3.
We advise the APPG today of the following:
From the evidence available, it has become apparent that the majority of NHS ‘CFS/ME’ clinics do not adopt a suitably biomedical approach towards M.E. sufferers. Instead, these clinics inappropriately focus on a Cognitive Behavioural Therapy approach, some combined with Graded Exercise Therapy approaches, neither of which has been shown to be effective treatments for M.E. sufferers, and for which there is evidence of potential risk to patients from both treatments.
We advise you that, by not focusing on a biomedical approach to diagnosis and treatment/support, and by focusing on controversial psycho-social treatments, such clinics are causing M.E. sufferers to be put at risk, both physically and psychologically. We therefore feel the approaches of these clinics are inappropriate for M.E patients.
In addition we remind the APPG of its duty to safeguard the interest of ME sufferers, and ask that it immediately clarifies its ambiguous position of supporting the setting up and continuation of the CFS/ME clinics – especially as that support is also being given on the extremely vague pretext that they are ‘a base to build from’, despite all evidence to the contrary. We also remind the APPG that their remit is to support, only the WHO code G93.3 of ME/CFS, and therefore believe an unequivocal position of insistence on only a biomedical approach should have been taken from the outset.
We trust that the APPG will now acknowledge that there are, within the ME/CFS community, serious concerns about and objections to the approaches of the majority of the NHS ‘CFS/ME’ clinics, and have this formally entered in the minutes….