Forward ME Group Minutes


Minutes of the Meeting held in the Television Interview Room, House of Lords, Tuesday 24 May 2016, 2.15 pm

Present: Countess of Mar (Chairman); Bill and Janice Kent (reMEmber); Christine Harrison (Brame); Dr Charles Shepherd (ME Association); Dr Paul Worthley (ME Trust); Sue Waddle (ME Research UK) and Cath Ross (25% ME Group)

  1. Matters arising
  2. Minutes of last meeting (15 July 2015) were agreed to be a true record.
  3. Apologies had been received from Sonya Chowdhury and Clare Ogden (AFME), Jane Colby and Anita Williams (TYMES Trust) and Hannah Clifton (ME Trust).
    1. Speaker Dr Martin McShane: Dr Paul Worthley reported Dr McShane had visited Burrswood.
    2. Dr Worthley told the group that the Trustees of Burrswood had decided to reduce the number of inpatient beds from 40 to 12. These would be used for bed-based care for people with low and medium dependency needs. It was not yet clear what provision this may include for people with ME. In the meantime they could no longer take people who were severely affected. His outpatient clinic would continue. Sue Waddle asked what the main problem was. Dr Worthley said it was finance. It was very expensive to operate 24-hour medical cover and the worldwide shortage of nurses added to the challenge and expense when agency nurses had to be employed.
    3. The Chairman suggested that a solution might be provided if the ME charities could combine and find funding to provide a small specialist in-patient unit. Cath Ross asked if there was anywhere at all that provided in-patient care for severely affected ME patients. Dr Worthley and Dr Shepherd said there were just one or two places – and there were mixed reports of their effectiveness.
  4. PACE
    1. Dr Shepherd said he had attended a Freedom of Information Tribunal on 21 and 22 April. The Chairman had hoped there would be a verdict soon but none had been received yet. The main argument from the PACE side had been that it was impossible to anonymise the data effectively. Members disputed this. The Chairman observed that the PACE team kept coming up with different excuses.
    2. Janice Kent asked if the matter could be taken to a higher level in the NHS. Dr Shepherd said a problem was that only the patients and a few medics were aware of this dispute. Most of the people he knew in the medical profession were completely unaware and were assuming the research was sound.   Sue Waddle asked about the possibility of Judicial Review. The Chairman said that would be very expensive – probably about £100,000. Cath Ross asked what would happen if it were withdrawn. The Chairman replied that the PACE team would be likely to be discredited, and the project would have to be reviewed. Dr Shepherd added that the Lancet would have to withdraw the publication which, at present, they think is satisfactory. If the data were to become available other independent researchers could review the PACE findings and come to an informed conclusion about their validity, but that would only happen if the Freedom of Information request was acceded to.
    1. Christine Harrison said she had asked the Chairman to write to them. They had replied to the effect that ME, under various different titles, could be found on their website. But when her local GP surgery tried to access Myalgic Encephalomyelitis with their new computer system they were unsuccessful. . She had found CFS, and “myalgic” which cross-referenced to CFS, but ME did not appear to exist in the SNOMED system. So if your GP were to diagnose you with ME, that would not be recorded in SNOMED. The Chairman said she would write to them again. Mrs Harrison said she would e-mail the correspondence to the Chairman.
    2. Members discussed the problem of different parts of the NHS having different computer systems. Dr Worthley said that on the system he used the only classification was Read Codes; SNOMED was not there. Mrs Harrison said that might change when his system was upgraded.
  6. DWP
    1. Dr Shepherd said he was having regular meetings with Maximus who had taken over from Atos. Sue Marsh, who had spoken to Forward-ME, was there. So too was Martin Forsyth who had been booked to speak to us but that meeting had to be cancelled. The Chairman asked whether she should invite him again; members agreed. Dr Shepherd said patients seemed to be satisfied with the service from Maximus (although less satisfied with the decisions from DWP).
    2. Dr Shepherd said the MEA helpline was getting an increasing number of calls from people having problems with PIP, for example from people who had been on DLA and were now not meeting the eligibility criteria for PIP. They were also getting a lot of calls about eligibility for the Blue Badge parking scheme, a matter which the Chairman had taken up before. Local authorities seemed to be misinterpreting the guidance as meaning if you have ME you can’t have a blue badge. The problem seemed to be in the wording of the guidance which says having ME does not mean automatic The Chairman said she would write seeking a change to the wording to make it clearer.
    3. Dr Shepherd also mentioned that a civil servant from DWP was attending the meetings at Maximus; she thought that the new Secretary of State, Stephen Crabbe, was genuinely concerned for claimants.
    4. Sue Waddle referred to the stress caused to patients by the length and complexity of the claim forms and the fact that they cannot be filled in online. The Chairman asked Mrs Waddle to write to her on the matter and she would table some questions. Mrs Harrison said that she was aware that DWP PIP were working towards having the computer capability for an on-line PIP form. Members discussed at some length defects in the assessment system. Cath Ross asked what was happening with the DWP training document. Dr Shepherd said it had been approved, although not yet perfect, and it could be viewed on the internet. Mr Bill Kent asked whether the reduction in benefit for the disabled announced in the budget speech was going ahead. The Chairman confirmed that it had been withdrawn.
  7. NICE
    The Chairman said not much could be done about it at the moment. We would return to the subject at a future meeting.
  8. Research
    1. Macroeconomic study: The Chairman announced it was going ahead. David Butcher had contacted her to say they had found a source of funding. Dr Worthley said a good macroeconomic study was needed. Others agreed, but Dr Shepherd added that this particular study may not have the necessary impact if it is not carried out in an academic research department.
    2. Biobank: Dr Shepherd said it had now opened up for the supply of blood samples and anonymised clinical data to research groups who want to make use of the resource. . Things were proceeding well. Mrs Waddle said she had visited and found it very interesting. Dr Shepherd said that if others would like to visit he could arrange it. Janice Kent referred to a paper by Dr Amolak Bansal on steroid receptors, and ME patients being “functionally Addisonian”.
    3. Charles Shepherd said this had been discussed at reMEmber’s recent conference in Sussex. Dr Bansal had said feedback from the USA indicated that people who had been treated with rituximab outside clinical trials were not responding as well as those involved in the clinical trials in Norway. Money was available for a study in the UK. Dr Bansal and others would be meeting to discuss this in June but there were a number of uncertainties surrounding a UK clinical trial.
    4. Mrs Harrison referred to a programme on Alzheimer’s she had seen recently and she and wondered whether this was something the biobank might throw light on. Mrs Kent referred to an article by Dr Mercola in America on research into Alzheimer’s and the use of Vitamin B12 to slow brain shrinkage. Dr Shepherd said he had discussed a trial of B12 with Dr Bansal. Mrs Kent said that every ME patient she knew who had taken B12 said it had been beneficial.
  9. Any other business
    1. Scottish Parliament and the “Named Person”. The Chairman said she was waiting to hear what the Supreme Court had to say about it. There was information on the TYMES Trust website.
    2. Review of ME/CFS services. Mr Kent said there was an urgent need for a nationwide review of these services. He would be happy to write to the Chair setting out the case. The Chairman asked him to do that.
    3. The “Canary” film. The Chairman said she would write and ask them to come and show it.

The Chairman thanked all members Date of next meeting to be announced. The meeting ended at 3.45 pm

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