Forward ME Group | Minutes of meeting held on 13 November 2012

December 21, 2012

Forward ME

Minutes of the Meeting held in the Television Interview Room

House of Lords

Tuesday 13 November 2012, 2pm


Countess of Mar (Chairman)

Dr Charles Shepherd (MEA)

Tristana Rodriguez (AFME)

Janice Kent (reMEmber)

Bill Kent (reMEmber)

Jane Colby (Tymes Trust)

Anita Williams (Tymes Trust)

Sue Waddle (ME Research UK)

Christine Harrison (BRAME)

Jenny Lincoln (AFME) observer

1. Apologies had been received from Mary Jane Willows, Anne Faulkner, Arlene Wilkie and Sonya Chowdhury. Mary-Jane Willows.

2. Minutes of last meeting (9 October 2012) were agreed to be a true record.

3. Matters arising. Referring to the answer to Question 4 at that meeting, Tristana Rodriguez said she was seeking assurances from Atos about the confidentiality of information given by patients about bad experiences with Atos. Referring to the answer to Question 3, Christine Harrison said she had written formally to Atos about problems in her area and they had taken her concerns on board.

4. DWP – Welfare Reform Act.

4.1 PIP. Christine Harrison read from her paper on the subject as follows:- “As part of Welfare Reform the Personal Independence Payment Implementation Development Group (PIP IDG) began on 16 May 2011 (date of first meeting). The IDG comprised representatives from organisations representing people with a variety of conditions. Over the past 18 months members of the IDG have strongly expressed their concerns and provided constructive input into the development process of PIP.

In September 2012 the IDG was changed to become the PIP Independent Stakeholder Forum (PIP ISF) with a now extended membership. A number of sub-groups have also been formed to continue to develop different aspects of the PIP process; at present there are 8 sub-groups of which I am a member of six – Vulnerable Claimants and Signposting; Future Design; Continuous Improvement; Reassessment; Communications; Reconsiderations and Appeals. Other sub-groups are; Supporting/ Preparing Local Organisations and Online Channels.

PIP will begin to be implemented from April 2013, with a view to everyone of working age being on PIP by the end of 2016.

Members of the PIP IDG, and now ISF, have worked hard on behalf of those they represent, and have always asked for a disclaimer to be included which states:

‘Engagement with disability organisations through the ISF and its working groups will help inform thinking and further development of PIP delivery arrangements. The PIP Programme recognises that this engagement does not indicate that stakeholders are in agreement with final decisions/outcomes’”

4.2 Dr Charles Shepherd said that the fluctuating conditions group continues to work with the DWP on changes to the Work Capability Assessment (WCA) although they thought it was a flawed assessment process, and they had a lot of reservations. Jane Colby commented that the question she had put at the last meeting (about people who might become ill through doing something they were told they could do), had not been answered. The Chairman said she would table a question. Dr Shepherd added that the Chairman had said she would ask about NICE’s pronouncement that ME is a disabling condition. The Chairman said she would ask a question about that too.

Christine Harrison said that she constantly highlighted that the most chronically ill/disabled and vulnerable are not being acknowledged and that their needs are not being identified or acknowledged within welfare reform and the new assessment criteria. She also highlighted that not everyone can be helped to lead ‘full, active and independent lives’ as the Government intended, because some were too ill or disabled.

4.3 Tax Credits. The Chairman said there had been a lot of discussion in the House. The Government seemed confident it would work, but that remained to be seen.

4.4 Work Capability Assessment and evidence based review. Dr Shepherd announced that Prof Harrington would be leaving soon. His third and final report was now due. His successor was not yet known. The Chairman agreed we should send Prof Harrington a note of thanks. Dr Shepherd said there was still quite a lot of work to do on the evidence-based review; the group had come to some compromises with Atos and the DWP. There was some discussion about the apparent assumption by Atos that anyone was capable of some work no matter how sick or disabled they might be.

5. Research

5.1 Medical Research Council. Dr Shepherd announced that the ME Expert Group was to be wound up (although he and Sir Peter Spencer had not agreed with that decision). However Professor Holgate was keen to keep the momentum going; he wanted to set up a research collaborative, similar to that for respiratory disease. The intention was to meet, have a website, workshops etc. There had been a meeting about this at the Royal Society of Medicine a few weeks before when it had been agreed to take the proposal to the APPG. They would like to launch the collaborative at the House in March or April of next year. The Chairman said she could host such a meeting but would need to book soon. She also asked whether we should ask Prof Holgate to come and speak to Forward-ME; this was agreed.

5.2 Dr Shepherd reported that funding for the Biobank was secured for another year.

5.3 NIHR. The Chairman reported that Prof Peter White was intending to do another study on CBT and Graded Exercise. She was concerned about this in the light of his group’s failure to produce the data for the PACE trial nearly two years after the results were published. She had provided a lot of evidence to Prof M Jepson (a professor of journalism) and had asked him whether there was a case for a complaint to the Press Complaints Commission. The British Medical Journal had said they would not publish any trial results in future unless they had all the data at the time of publication.

5.4 ME Research UK. Sue Waddell passed round a handout giving website references for MERUK’s facebook page; a study with Prof Blomberg (Sweden) involving microbiomarkers; a trial of the effects of oral vitamin D supplementation on ME patients with cardiovascular risk, and funding a 1-year extension of the collaborative Biobank project.

Janice Kent referred to a biobank project which was the subject of a research proposal by Dr Esther Crawley. Dr Shepherd said this was not connected with the AfME/MEA/ MERUK biobank work. The Chairman said she thought it was a genome research project.

6. Long Term Conditions Outcomes Strategy

Bill Kent asked whether there was any news of what was happening. He had seen nothing since the issue of a paper announcing the strategy in July. Christine Harrison said another paper had just been issued. It could be accessed on the NHS Commissioning Board website. The Chairman suggested looking at Hansard as there was a statement in the House on the subject on the day of the meeting. Tristana Rodriguez said she would be attending the Neurological Alliance AGM where the subject was likely to be raised. Bill Kent reminded members that the strategy would cover neurology, dementia and mental health; this covered a huge area and there was a danger of ME being overlooked or “dumped” with mental health.

7. HPV vaccination

The Chairman said a lot of children diagnosed as having ME could have been damaged by this vaccine. Anita Williams reported concerns about pressure on parents to allow vaccination, even while a child was unwell. Her 12 year old daughter had been ill and on antibiotics when the vaccination was due. She was pressurised to allow the injection at a “mop up” clinic two days later – so close to the original date that no child would be fully recovered; without information on this issue, other parents could have their child vaccinates when their immune systems were not fully recovered. There then followed a general discussion about the possible dangers of vaccines.

8. Lyme disease

The Chairman said this condition had similar symptoms to ME. She had asked a lot of questions on this subject and had recently visited laboratories. She found the labs very helpful. It was evident that the diagnosis was by no means as clear-cut as had been claimed. There was a need for much more rigorous investigation and diagnosis. Lyme disease was probably more common than many medics had claimed.

9 Any other business

9.1 Leeds. The Chairman read from a letter from the Department of Health about cancellation of the service level agreement.

9.2 Children. Jane Colby announced that she had been advising the Department for Education on the new government statutory guideline, shortly to replace “Access to education for children with medical needs”. The Department had accepted all her recommendations and, if Ministers made no changes to the final draft, it would be a great improvement on its predecessor.

9.3 Janice Kent expressed concern about the quality of doctors in the ME/CFS services. Specifically she had been made aware that the Lightning Process was being recommended for some children. She was taking up the matter with the NHS Trust concerned. Dr Shepherd commented that anyone in the NHS who did this could be putting themselves in a very dodgy position. The Trading Standards and the Advertising Standards Authority had more than once required the LP practitioners to modify their claims. The Chairman suggested contacting Trading Standards in this case too. Jane Colby spoke about a teenager who thought she had been cured by the Lightning Process, but one year on she was ill almost to the point of suicide.

10. Next meeting. A date to be arranged, probably in January.

There being no further business the meeting ended at 3.30pm.

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These minutes have been filed at the Forward ME website:

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