Minutes of the Forward ME Group of charities | 15 October 2013

Forward ME

Minutes of the Meeting held in the Television Interview Room

House of Lords, Tuesday 15 October, 2pm

Present:

Countess of Mar (Chairman)
Janice Kent (reMEmber)
Bill Kent (reMEmber?
Christine Harrison (BRAME)
Tanya Harrison (BRAME)
Dr Charles Shepherd (ME Association)
John McCready (AfME)

1. Apologies had been received from Anne Faulkner, Arlene Wilkie, Jane Colby, Sue Waddle, Mary-Jane Willows, Sonya Chowdhury and Hannah Clifton

2. Minutes of last meeting (2 July 2013) were agreed to be a true record.

3. Matters arising.

3.1 Lightning Process. Dr Charles Shepherd said he was aware the SMILE project had finished. Had any information emerged about it? Bill Kent said he had not received any information but he would investigate and report back to members.

3.2 Research Collaborative. Dr Charles Shepherd reported membership applications were coming in. Any Forward-ME members who had not yet applied could do so. The Annual Conference outlined by Prof Holgate at the last meeting was planned to take place in Bristol next year. Patients were to be involved and their views sought on what sort of research they want.

3.3 Burrswood (item 5.5 of last meeting). The Chairman announced she would be visiting Burrswood the following week.

3.4 PIP (item 6.1 of last meeting) Christine Harrison reported that there should have been a meeting the following week but it had been cancelled with the recent consultation regarding the mobility component. She had been trying to get across to the DWP the physical impact of travelling on ME patients; she wanted that included in the training manual. Tanya Harrison said the calling of people currently claiming DLA for reassessment had been deferred until the end of October. Dr Shepherd said the MEA was getting very little feedback from people who were applying for PIP. What was happening about online applications? Christine Harrison explained the DWP hadn’t got the IT ready yet, but in any case there were many patients who did not want to apply online. They should have the choice of applying on paper if they wished. (nb since the meeting Christine Harrison has been in contact with the PIP team at the DWP who have said “It is our intention to introduce online services for PIP as soon as we are able to do so. We are considering a number of options including an online version of the PIP claim form and where this will sit alongside other channels including paper. At this stage we cannot confirm when online forms will be available. In the meantime the telephone remains the quickest and easiest way of making a PIP claim, but paper forms are available for those who cannot use the phone or have someone to help them”.

3.5 Social Care Bill and Children and Families Bill. The Chairman reported she was following the progress of these Bills carefully.

4. NICE Guidance on CFS/ME

4.1 Dr Charles Shepherd had e-mailed members informing them that NICE had decided not to review the Guidance, and that it was to be placed on the “static list” (as distinct from the “active list”). Members were to decide what to do about this. As she was unable to attend, Jane Colby had sent a short list of topics which were discussed.

4.2 Dr Shepherd referred to the minutes of a meeting of the All-Party Parliamentary Group on ME (APPG) in February 2007 which he had also e-mailed to members. The NICE team had addressed that meeting. Forward-ME now had to decide whether to take a united position, the wording of that position, and how to communicate it to NICE. He added that in order to comment on the NICE decision you had to be a NICE Stakeholder.

4.3 The Chairman proposed that we call upon NICE to reconsider its decision and put ME/CFS on the Active List. She further proposed that we agree upon the wording of a letter which each individual Forward-ME organisation would send under its own name, as Forward –ME itself was not a stakeholder, adding the names of the other members. Agreed by all present.

4.4 The Chairman added that we now had to decide upon the wording of that letter and what evidence we could cite to back our call for a revised decision. Dr Shepherd said there had been a review in 2011 (following the PACE trial) but that was all. Christine Harrison referred to new and emerging evidence such as the ME ICC Primer (2012) produced by clinicians from around the world. Dr Shepherd commented that a problem with some of the published work was that it was not evidence but based on clinical experience. Tanya Harrison pointed out that fresh diagnostic guidance had been produced since NICE.

4.5 John McCready declared that we would not get NICE to change their mind on the grounds that we don’t like their existing guidance. The Chairman agreed but said there was a lot of research in the pipeline. John McCready proposed we should therefore say that this was the wrong time to put ME in the “static” category.

4.6 Janice Kent referred to Dr Amolak Bansal’s work on B-cell and T-cell depletion as an example of the advanced scientific work now taking place.

4.7 The Chairman asked Dr Shepherd to pick through relevant material and draft a letter to go out soon. We would ask them to reconsider their recommendation. She asked members whether she should register Forward-ME as a NICE Stakeholder. This would mean that one letter would be sent from Forward-ME on behalf of all members instead of the same letter from each member of the Group. This was agreed.

4.8 Dr Charles Shepherd suggested the following draft to which individual members contributed. “At our meeting today at the House of Lords we discussed the proposal to place the NICE Guidance on CFS/ME on the static list. We express our extreme concern over this proposal; we strongly feel the Guideline must remain on the active list. This is precisely the wrong time. Medical/scientific advances in relation to ME/CFS research are advancing rapidly. We are moving to a position where the Guidelines should be constantly reviewed”.

4.9 The Chairman advised quoting from Professor Littlejohn’s address at the APPG meeting in February 2007 (as recorded in the minutes of that meeting) when he referred to “active consultation and review etc”, none of which had materialised. We should also say that individual member organisations would be submitting their own representations which would cover these points in more detail, but that we all felt so strongly on this subject that we were presenting this united representation. There was discussion about whether we should refer to ME/CFS or ME and CFS. We agreed it should be the latter. It was also agreed that the Chairman would sign the letter. The Chairman said if the letter could be typed she would get it out that afternoon. Janice Kent said she would type the letter, the words as agreed by the Group and dictated by Dr Shepherd. The Chairman said it should be addressed to Mr Oliver Bailey.

4.10 Tanya Harrison referred to the NICE criteria being used as diagnostic criteria. She said that this list of symptoms was never supposed to be used as such. In her locality the local services would be using different criteria for ME and CFS. Dr Charles Shepherd said the MEA would also put this in their own submission. Other members could do so if they wished.

5. Any other business

The Chairman announced she would meet Shirley Conran on 5 November. She also said that Mary Jane Willows and Jane Colby were very concerned about children with ME being taken into care. Figures were going up. This was something we would need to concentrate upon.

The meeting finished at 3.00 pm