Letters to RiME, July 2007: NHS Clinics: More patients’ concerns

Campaigning for Research into ME (RiME)
Letters to RiME, July 07: NHS Clinics: More patients’ concerns

Ref: 602 Leader of Kent Maidstone Group

Dear Dr Turner, I am writing to you in your capacity as Chairman of the APPG on ME. I attended the CBT clinic in Maidstone and do not believe that it offers anything to those with neurological conditions like ME. Those members of our Group I have spoken to feel that that money would be far better spent on biomedical research instead of psychiatric treatment offered by the Kent clinics.

At the APPG meeting of 22 February 2007, I sent a message stating that our Group welcomed the fact that the APPG recognized ME as a neurological illness, as defined by WHO ICD-10 G93.3 and asked if you were aware that the Kent clinic should by definition exclude patients who meet this criteria.

People with ME in Kent are not concerned about being excluded, but are worried that the service offered by the clinics is not about their condition (ie neurological ICD-ME). I enclose letters from people who are boycotting them for this reason, as they do not want funding of them to continue.

Is it possible to let parties other than MEA and AfME, despite their much smaller membership, have their say at future APPG meetings, and include those who can not attend because of their condition, to have their say by proxy?  I ask that at the APPG meeting on 12 July 2007, that the Group discuss biomedical research and not the NHS clinics which offer the wrong kind of treatment entirely.

May I also request that you read these points out at the meeting?

I look forward to hearing from you.

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Ref: 550 Lancs

For the past twelve years there has been a CFS clinic at North Manchester General Hospital run by four specialists who believe ME is a biological illness. The clinic has taken referrals from all over the North West of England.

When the Manchester CNCC on CFS/ME was set up two years ago a psychiatrist, unknown to me, who also works at North Manchester General got the job of Clinical Champion. The four local specialists who believe ME is a biological illness were never even told that the job of Clinical Champion was available until AFTER the post was filled. The Manchester Psychiatrist Clinical Champion is now also chair of the whole English CNCC on CFS/ME collaborative. At the launch meeting for the Manchester CNCC he quoted only the psychosocial theory of ME. I have the lecture slides to prove this. At the lecture he expressed the psychosocial dogma that doctors who believe ME is a biological illness are an obstacle to the recovery of ME sufferers. When I asked him at a committee meeting to confirm if he truly believed in this dogma he refused to answer.

I have just been told that after twelve years the CFS clinic run by the specialists who believe ME is a biological illness is to be closed and the psychiatrist is to get all the money that used to go to the running of the clinic.

People in Greater Manchester will no longer have access to an NHS specialist who believes ME is a biological illness. This is all thanks to the new CNCC on CFS/ME set up. In future we will only have access to a service controlled by a psychiatrist who believes ME is a psychosocial illness.

I am horrified that the Chair of the CNCC on CFS/ME Collaborative for the whole of England is a psychiatrist who believes ME is a psychosocial illness and is opppsed to doctors who believe ME is a biological illness.

The Chair of the Collaborative is in charge of training and education for all the CNCCs on CFS/ME…

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Ref: 604 Yorks (Castleford)

Dear Dr Turner, … father of a young ME Sufferer aged 25 who has suffered from ME for the past 15 years. During this time she has had to put up with disbelief from the medical and educational establishments.

Various management theories and treatments have been suggested and tried all to no avail; some have had short term benefits but nothing lasting. Even counselling at the Leeds CFS Clinic, to help her come to terms with her fatigue has not been of such a great benefit, she still suffers from the physical aspects of ME, and the pain and depression that goes with the continues ignoring of the fact that what is really needed

It is with the past in mind that I consider the £8.5 million spent on such management would have been far better spent on biomedical research. I would be grateful if you would mention this at the APPG Meeting on July 12 2007…

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Ref: 605 Yorks (Leeds)

Dear Dr Turner, I am writing to you in your capacity as Chair of the APPG on ME, and the meeting July 12 which will discuss the issue of the NHS ‘CFS/ME’ Clinics.

The Leeds CNCC has nothing to offer people with genuine ME. I haven’t attended nor has anyone else I know with ME.
I enclose information about the 2006 Florida Conference. How much longer can the UK Government ignore the overwhelming evidence which indicates physical damage in ME patients?

ME needs proper biomedical research not more psychiatric treatment ie Graded Exercise/CBT programmes.
Since I will be unable to attend July 12 because of the ME, I ask that you include these points by proxy…

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Ref: 607 Derby

… I was the leader of MEND (North Derbys ME group) from 1992 through the 1990’s. It had a membership of 250.
Please note that the title of the Group was Myalgic Enacephalomyelitis (ME).

The only way forward to help people with ME is proper research into the physical causes and disease process of the neurological illness ME, as defined by WHO G.93.3 and the Canadian Criteria.

Re. the new centres which have been set up: The nearest is the Sheffield CNCC which offers CBT – P.35 of ‘CFS/ME Service Investment Program Report 2004-6’, authored by Prof. Pinching + Pat Noons, (enclosed) – I can’t relate to it at all.

Not only is this form of treatment inappropriate to ME patients, but I feel the results will be ‘skewed’ (imprecise admittance criteria) and used by the Government as an excuse not to research the physical causes of ME.

Is it not ironic that this meeting is not about the former – ME Research – but psychiatric/psychological models of treatment which are not helpful to people with ME?

Please read this out July 12, if you have the opportunity.

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Ref: 609 Leics

Dear Dr Turner, The East Midlands CNCC is not about neurological ICD-ME and offers same old, same old…
I think there is a problem in that the APPG gives too much weight to what the MEA and AfME say on matters such as the clinics. Many who don’t subscribe to the above (the vast majority with ME) would like to be at the APPG meeting July 12 to (1) challenge the nature of the ‘CFS/ME’ clinics (2) ask that the £8.5m be diverted into biomedical research.
Since I will be able to attend, would you please read out thses points on my behalf…

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Ref: 612 Bucks

Dear Dr Turner, I am writing to you in your role as Chair of the All Party Parliamentary group on ME. 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. Re. the centres which are currently being set up, the nearest seems to be the clinic at Barts in London. I don’t deem the types of treatment which are being practiced there ie Graded Exercise and CBT as an appropriate way forward for patients with the neurological illness ME. There is ample and irrefutable evidence of the physical basis of ME. Do you think it shameful that the British Govt lags behind countries such as Chile and Latvia 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?

This, in my opinion, is what the APPG should currently be discussing. Since I am unable to attend the next APPG meeting July 12, would you please make these points by proxy…

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Ref: 615 Cornwall

… The clinics in the West country are ****. I hope the ME issue, like the property crisis, will lend weight to the Cornish Independence Movement. We pay tax to the Treasury at Westminster, and what do we get in return? Clinics run by psychiatrists and psychologists, and the stupid PACE + FINE Trials. Just think, if we had a Cornish Parliament we could have a say in how those taxes are spent; hopefully, a biomedical ME Research program… Pleased you are going to Westminster and raising people’s concerns re. the clinics. Aren’t there any people in London/South East who can support you…

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Ref: 617 Surrey

Dear Dr Turner, I sent the enclosed to a number of MPs last June:

…. In May you asked the Secretary of State for Health a question about the new NHS ‘CFS/ME’ Centres… The nearest to me is Sutton. The job description… appeared on AfME’s website, last year (see RiME Newsletter, Spring 2005).

Do you really think that the above will help with the neurological illness ME, and that it is worth saving? Do you not think that ME might be being confused with something else? One wonder if politicians are paying sufficient to the crucial issue of nomenclature… If you want to help people with ME, I suggest your next PQ is about why the Govt is not researching the underlying physical causes of ME… A year on, there is little I can add to these points.

I sincerely hope the funding for the ‘CFS/ME’ Clinics does run out. I would like to see the money diverted into biomedical ME Research. I won’t be able to attend the meeting July 12, so please make this point in my absence…

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Ref: 618 London (Greenwich)

Dear Dr Turner, I fail to see how CNCCs like the one at Barts will help people with neurological ICD-ME.

Let’s compare what is in its leaflet ‘The Chronic Fatigue Service’ to the NICE Draft Guidelines:

Barts Leaflet: GET: GET is about gradually increasing your physical activity. Usually you see a physiotherapist who helps you work out a basic activity routine, then together you plan to gradually increase the amount of physical activity or exercise you do…

NICE: GET: 1.3.1.14: Adults… should be offered a program that includes planned increases in duration of physical activity/exercise followed by increases in intensity leading to aerobic exercise….

Other clinics eg Kent also prescribe GET. A leaflet entitled West Kent Chronic fatigue Service refers patients to Trudie Chalder’s book, ‘Coping with Chronic Fatigue’ (didn’t you sign a document – The Gibson Report – which descbibed her work ‘impressive’?) which says Ch.6, ‘Exercise three times a week, half an hour of exercise. Make sure it is something you enjoy. A brisk walk in the country is enough… ‘

Also: Base-Line Activity:

NICE: 1.3.1.20: Managing setbacks: During a setback, when there is an increase in CFS/ME symptoms or symptoms are exacerbated, exercise or physical activity should be maintained if possible to avoid the negative effects of de-conditioning and withdrawal form activity….

Are you aware that rigid base-lines are being implemented via the NHS Clinics eg a person who attended the Maidstone Clinic says, ‘ …. Our individual baseline was then set at whatever we’d managed that week, with instructions to maintain it at that level. This wasn’t at all successful as a number of the group then pushed themselves for the following two weeks, to their detriment’.

Dr Turner, didn’t you condemn the NICE Guidelines, ‘no use to man nor beast’ (APPG Meeting Nov. ’06) but support the ‘CFS/ME’ Clinics per se (House of Commons 6/3/06)? In which case are there not anomalies that need addressing?

I would like to be there July 12 to put these points to you to you directly but, as I will be unable to, would you please raise them by proxy, and then address them.

I ask for a reply, also, in writing please…

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Ref: 620 Kent (Isle of Grain)

In January 2003 I had an appointment to attend the Maidstone Clinic (Maidstone is approx 25 miles from where I live). The Chronic Fatigue Clinic was situated away from the hospital next to the psychiatric unit. I was interviewed twice to assess whether I was suitable for CBT. At the time I was not aware of being assessed for CBT, but found out later. I did not want to go as, having had ME 11 years, I was pacing and adjusting my life style to compensate for the ME. However, if I did not go I could never cite or say what happened.

In January 2004 I was given an appointment at Medway Maritime Clinic (14 miles from home); I could drive there and park in the disabled bays. I certainly was not ready for the trek through Medway hospital to the appointed room; by the time I reached the room I was in pain, exhausted and a bit out of it. Undeterred, I stayed; the room started to fill up with other ME people, filling up the uncomfortable chairs.

There must have been about 15 of us and, at the time, I thought it very strange that a CBT session should be a group as CBT is personal and everyone is an individual and will have different problems; some will be to shy to share; others will dominate the group and the whole thing will become ineffectual; as people needs are not met they will not come again and fall through the net, which did happen.

The session started the same as any other group, name introduction act. There were three leaders: a lady who ran the session, a physiotherapist and a nurse. I am not sure why they were there as they did not do much. We were all asked our goals and aspirations, and what we would like to gain from this experience. Some of the answers saddened me, as people would say I would like to get better from having CBT, others just wanted some relief. Personally, I wanted less pain and exhaustion. I asked about pain control and was told there was none.

The monthly sessions entailed forms to be filled in at home on our pacing methods. If you know anything about ME trying to fill in forms when you have cognitive fog just does not happen. When I am ill I cannot write a letter let alone fill in what I am doing as I have not got the energy to even find a pen.

Each month I would turn up and for over a week after attending I was ill from pain and exhaustion. However, still undeterred, I made it for the whole year’s sessions leaving out one as I was too ill to go.

October 2005, they ended the monthly get togethers and told us we would be emailed re. our next session.

October 2006, we were now down to five persons and were asked how we felt the CBT had helped. And that this was the last appointment; the look on the four people with me was one of astonishment and questions like – is that it, no follow-up? We left in utter dismay; we had seen no consultants; nothing was ever done for us medically, just flip charts and forms.

In one of the sessions a man collapsed we were afraid for him because most of us knew that when a person collapses with ME he needs to be laid down and cared for; as he fell forward in his chair, the group leader said leave him, he will be ok; there was no compassion for this man.

Conclusion: … The whole exercise was a waste of NHS money as we were all long term sufferers who had learnt to PACE, through trial and error. For the people who suffered ME pain there was no help; we were told that for our pain it would be better if we steer clear of certain kinds of pain killers that were likely to help, as they were mainly morphine based and we would end up having addictive problems.

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Extracts from RiME Newsletter, Autumn 2005:

Kathleen McCall, leader of the Winchester and Eastleigh ME Group:

… What makes me laugh is that to our face they call this the ME/CFS Clinic when in reality it’s the Hants and IOW Chronic Fatigue Service…. We are meant to be reassured by the fact that the Southampton Clinic is modelled on the Wareham Clinic in Dorset. From correspondence I’ve received from PWME who’ve attended the Wareham Clinic, I’m not reassured at all, as Wareham seems to show a strong psychiatric bias of it’s own. One ME patient at Wareham was told she was having treatment based on physical strategies for dealing with ME; they then wrote to her GP saying treatment was focused on ‘identifying and challenging negative thought processes that could have hindered her recovery… ‘ What PWME primarily want is proper research into their condition and, with this mind, we support RiME’s efforts… ”

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Chair of Birmingham Solihull Group, 13/7/05:

The members wish to express their deep concern that the patients’ representatives… are clearly being excluded form any meaningful dialogue in the development of the new services for ME/CFS at the Birmingham and West Midlands CNCC and the S Birmingham LMDT. Assurances were given that, although the Birmingham + Solihull Mental Health trust was chosen to ‘site’ the bid, the new ME/CFS services would operate independently from the psychiatric service. This is not the case…. Accordingly Solihull and S Birmingham Support group have advised their patient representatives to disengage from any further participation…

The latter, 11/2/07:
I see West Midlands CNCC going the same way as many others – very short of funding and not much on offer in the way of anything except diagnosis. Our members’ view is mostly the same as your contacts – nothing in it for them and certainly not what they wanted. We asked the members who had been to the clinic to rate it out of five and we had a lot of zeros.

Paul Davis
7 July 2007

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