Countess of Mar’s ‘Forward ME’ Group – minutes of meeting, 26 January 2011

February 15, 2011

Minutes of the meeting held on
Wednesday 26 January 2011
2.30 PM

1. Present:

Margaret Mar – Chairman
Christine Harrison – BRAME
Bill Kent – ReMEmber
Charles Shepherd – MEA
Mary-Jane Willows – AYME


Tanya Harrison – BRAME
Jane Colby – TYMES Trust
Janice Kent – ReMEmber
Peter Spencer – Action for M.E.
Sue Waddle – MERUK

2. Presentation by Dr Jane Rayner, Chief Medical Member of social security tribunals including questions and answers

Dr Rayner spoke to the Group on three points:

a) Introduction to the social security tribunal service

b) Background of the service

c) The importance of appealing

She told the Group that the tribunal service was part of the court service, was neutral and was independent of the Department for Work and Pensions (DWP). As 50% of decisions were overturned, she felt it would be helpful to ascertain why people were deterred from appealing.

Dr Rayner was the first Chief Medical Member. Her clinical background was in diabetology and endocrinology. She had a special interest in chronic diseases, adolescents and ethnic minorities.

Dr Rayner was employed to set up and oversee an appraisal and training system for all the medical members who sit on social security tribunals. Doctors in the Social Entitlement Chamber now have 3-yearly appraisals with a doctor and a judge.

When asked what training was given on difficult conditions such as M.E. Dr Rayner explained that once a year doctors in the chamber were given a self-appraisal questionnaire and asked to identify any training needs. Dr Rayner then devised training taking those needs into account. This year, for example, they were looking at chronic fatigue syndrome and chronic pain.

She was asked whether it was possible for doctors in the chamber to specialise. Dr Rayner said that this was not necessary, as cases were not listed by diagnosis. Assessments were made on the basis of functional loss rather than diagnosis. However, she encouraged doctors to do background research if they were presented with a case involving a diagnosis with which they were not familiar.

Dr Rayner confirmed that the service was given feedback on complaints and that they were taken seriously.

It was observed that, because many doctors are ambivalent about the genuineness of ME and reports had been received of panel members exhibiting this ambivalence at tribunals, many claimants did not appeal. Some people with ME did not have the energy to appeal or to complain. An example of documentation that did not reflect the truth, and a description of one lady who contemplated suicide as a result of her fear of losing benefits were given. There seemed to be two extremes of experiences of the tribunal service. Some people reported very positive experiences whilst others were treated badly and complained of disparaging remarks made by tribunal doctors.

Dr Rayner was asked whether doctors should express their reservations about the validity of a diagnosis of ME. She said that she could not comment on DWP doctors, as they belong to a separate organisation, however she would take reports of tribunal doctors making disparaging remarks very seriously.

When asked about the complaints procedure, Dr Rayner said that the claimant should write to the regional judge. There was a robust complaints procedure. In many regions the hearings were recorded so that they could be referred to. She was unsure whether it was also possible to complain via the website. (See attached for a list or Regional Judges’ addresses).

Dr Rayner said that she had met Professor Malcolm Harrington and she had told him that sometimes, when she read a report, she had an image of an individual in her mind but when they appeared before her the person bore no resemblance to the person portrayed in the report and that it was as if the report had been written by somebody completely different. She had also encountered cases where examining doctors had insisted that the claimant sign their medical report without having been allowed to see it

After being told that most people with chronic conditions want to concentrate on the things they are able to do and found it very hard to describe what they could not do, some of which they found embarrassing to describe, Dr Rayner said that people must leave the tribunals procedure with their dignity intact. They were exercising their right to an appeal and the tribunals system should act as a safety net for those who have been incorrectly assessed.

Dr Rayner was asked whether the system was coping with its current workload, and whether it would cope in the future as claimants were migrated from incapacity benefit to employment and support allowance (ESA). Dr Rayner replied they were not currently coping which was why they have just appointed 200 new doctors. Their workload had increased. They used to work at 250,000 appeals a year. That had now risen to 500,000 appeals a year following the introduction of ESA.

Charles Shepherd explained that he was a member of the working group appointed to look at the descriptors for fluctuating conditions, being overseen by Professor Malcolm Harrington. Dr Rayner said that she was concerned about the internal review of descriptors. Having looked at the proposals for the new descriptors, she wondered who would qualify for ESA. The importance of evaluating not just whether someone could perform an activity, but whether they could sustain this level of activity over time was stressed. The importance of getting decisions right in the first instance in order to reduce the number of appeals and to save money was also stressed.

Dr Rayner referred to the chamber’s president’s report, which stated that the most common reason for overturning a decision is additional evidence: most commonly verbal evidence from the claimant.

When asked whether there were any specific concerns about Atos reports Dr Rayner said not, although they did struggle with the standard of some of the medical reports. Some of the recorded information was untrue and claimants denied making some statements.

It was agreed that, when people complained, they often did it in the hope that it would prevent the same thing happening to someone else. It would be an incentive to people to report problems if they felt that they could influence the process.

When asked whether feedback forums could be held between members of the chamber and patient groups, Dr Rayner said that it would be difficult to maintain judicial independence. Doctors were bound by the rules laid down by Parliament and could not use clinical judgement. The DWP had complained that the tribunal service had become part of the benefits culture and needed to be reminded that work is actually beneficial to most people. Her personal view was that it would be helpful for doctors in the Chamber to be allowed to exercise clinical judgement.

The Chairman thanked Dr Rayner for speaking to the Group.

3. Minutes of the last meeting

The minutes of the meeting of 26th October 2010 were agreed and signed by the Chair.

4. Matters Arising

BK asked where he could find a copy of Professor Harrington’s report.

Action: CS will order several hard copies of the report to distribute among the Group.

BK asked whether there was any news on the review of the NICE guidelines for M.E./CFS. CS said that NICE have said that they will consider a review once the results of the PACE trial are published.

5. DWP working group on fluctuating illnesses

CS read out the key points from a briefing letter which he had received from Professor Malcolm Harrington, along with a report from a review of mental health descriptors giving some ideas on approach.

TR asked how the process would align with the internal review recommendations which had caused considerable dissatisfaction amongst disability organisations. C.S. advised that this is explained in the letter.

Action: CS to feedback to Forward M.E. once he has attended the initial meeting of the working group.

The Group thanked CS for taking this piece of work on.

6. Current Research

CS advised the Group that a decision is still being awaited on ring fenced funding for M.E. research by the Medical Research Council.

* Addendum:

On Thursday 27 January 2011 the Medical Research Council (MRC) announced that it was committing £1.5m for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

CH asked whether anyone will pick up the work of Jonathan Kerr. CS said he thought not – certainly in the UK in the current situation, although gene expression research was continuing elsewhere. It was made clear the Dr Kerr ‘s last grant from the CFS Research Foundation ran out in July 2010 and that he had not applied for further funding. It was understood that he wished to return to clinical work.

CS tabled a paper on an appraisal of cognitive behavioural therapy and graded exercise therapy in Spain. Regarding Xenotrophic Murine Retrovirus, CS told the Group that since the last meeting, several papers had been published in the December issue of the journal Retrovirology hypothesizing that the positive XMRV results in samples from the piece of research done by the Whittemore Peterson Institute were the result of laboratory or other contamination.

The Chairman talked the Group through a paper which she had circulated prior to the meeting and had found interesting. The paper reported statistics from the M.E./CFS service in Newcastle that 40% of people referred to this service do not have M.E./CFS.

MJW told the Group that the report presents typical figures. She would like to draw the Group’s attention to the fact that all specialist services are now under threat, and that the Group would do a disservice to the people who rely on those services if they did not defend those services. She would like to propose this as an agenda item for the next meeting. BK seconded the view.

The Chairman advised that she would also like the Group to look at the number of people with M.E. sectioned under the Mental Capacity Act at the next meeting.

Action: MJW to contact the British Association of CFS/ME (BACME) to get a list of all specialist M.E. services under threat.

CH asked that GP consortia were also added to the next agenda.

7. Any other business

CS asked about the Chairman’s recent parliamentary question relating to information held in the public records on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, which also led to a further question.

8. Date of next meeting

Tuesday 1 March 2011

9 thoughts on “Countess of Mar’s ‘Forward ME’ Group – minutes of meeting, 26 January 2011”

  1. ” Regarding Xenotrophic Murine Retrovirus, CS told the Group that since the last meeting, several papers had been published in the December issue of the journal Retrovirology hypothesizing that the positive XMRV results in samples from the piece of research done by the Whittemore Peterson Institute were the result of laboratory or other contamination.”

    In case anyone doesn’t realise, the four papers in Retrovirology did not apply to Lombardi et al. (from the WPI, National Cancer Institute and Cleveland Clinic) As they used different methodology, did not account for all the evidence, were unable to explain the antibody and culturing results. More positive studies are on the way.

  2. Thank you for making the minutes of ForwardME available. Isn’t Countess Mar a treasure!

    JT is quite correct. How could you have made that statement, Dr. Shepherd? The Retrovirology papers from December 20th only showed that their tests were contaminated. Read the comments printed against the studies in Retrovirology.

    Regarding those faking illness, the only reason ME is hard to prove is because the relevant tests are disallowed under NICE and Fukuda – never mind the Oxford 😮

    Re BACME – why is this organization opaque, and unavailable for patient scrutiny?

        1. In order to become an executive member of BACME, one has to agree to the constitution, which binds one into endorsing the NICE guidelines.

          I totally understand why IinME could not bring themselves to do that.

  3. CS told the Group that since the last meeting, several papers had been published in the December issue of the journal Retrovirology hypothesizing that the positive XMRV results in samples from the piece of research done by the Whittemore Peterson Institute were the result of laboratory or other contamination.

    CS should also have mentioned that anyone advancing such a hypothesis is either delusional or acting fraudulently. The actual papers said no such thing (although some of the hyperbolic commentary did). As John Coffin himself said none of the papers invalidated previous work, and merely urged caution with PCR. It is of note that PCR was only one of several methods used by Lombardi et al. in the Science paper, and that the possibility of contamination was rigorously excluded for.

    Dr Eric Klein gives a full rebuttal here:

  4. Thanks for posting these minutes. I always find them interesting.

    Despite all the consternation over classification, labels, and criteria; isn’t it interesting that 40% of referrals are rejected?

    Far from ‘faking illness’ as Jace so nicely puts it, I find it quite incredible that clinics, which are damned by those who see that and ‘unfit for purpose’, and rejecting anyone at all.

    To assume that these people do not have our illness, and are therefore ‘fakes’ is, to say the least, inflammatory. Why, some might, for example, have been diagnosed with Coeliac Disease, or some other serious illness for which they had not been properly tested by their referring GP.

    As to CS presenting the issue of negative research into XMRV, he did only that. And so what? Don’t damn him for simply stating that these reports were in existence.

    The news about Dr Kerr was very sad. I had recently looked into the work he was conducting, and found it very interesting. That someone will not perhaps pick up on his efforts, is a great shame, in my opinion.

    Further confirmation then that these ‘specialist clinics’ could face cuts or closure. I wonder if that applies to the services offered by specialists outside of these places?

    I do hope not. Where else would one find someone who at least has taken the time to specialise? This is a potentially catastrophic development.

    I guess we will have to wait and see… again.

    Failing that we could wait for the WPI to use our money in the UK and open and clinic that will charge patients for its’ services I suppose.

    Ho hum… life with this illness is never dull 🙂

  5. The XMRV reports do not exist. They do not hypothesise that the positive XMRV results in samples from the piece of research done by the Whittemore Peterson Institute (and NCI and Cleveland clinic) were the result of laboratory or other contamination. They don’t conclude that.

    The clinic that produced the study showing 40% are misdiagnosed is not your average clinic. You also don’t know how many they are still misdiagnosing. They have a researcher there who does think ME is a physical disease, the other clinics generally do not. They have aberrant beliefs about what triggers and continues to cause of ME.

  6. Pingback: Ten things to remember when filling in the Employment and Support Allowance forms | ME Association

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