Forward ME Group Minutes – 10th January 2018

Minutes of the meeting held  in Residence 2, House of Lords, Wednesday 10 January 2018 starting 2pm

Present: Countess of Mar (Chairman); Dr Charles Shepherd (ME Association); Bill Kent (reMEmber); Tony Crouch (representing 25% Group); Jane Colby and Anita Williams (TYMES); Clare Ogden (AFME); Hannah Clifton and Dr Paul Worthley (ME Trust); and Dr Willy Weir.
Apologies had been received from Sue Waddle (MERUK), Christine Harrison (BRAME) and Janice Kent (reMEmber).

  1. Green Paper on Mental Health Services for Children
    1. The Chairman said there was not a lot in the Green Paper for Forward ME. She would write to Kathryn Pugh (NHS England) and advise her accordingly. We should point out that ME is not a mental health problem. She invited other comments.
    2. Jane Colby added that there was a tendency for schools to think it was a mental health condition because children with ME were routinely referred to mental health services.
    3. Tony Crouch said we should include the need to talk to DfE about the training of teachers. The Chairman said it might help if she were to table a Question on these issues. (see footnote).
    4. Jane Colby said that people in the education world seemed to find it hard to understand that ME qualifies as a disability. Tony Crouch added that the Green Paper said very little about children who are at home because too ill to attend school. The Chairman said she would include all these points in her letter to Kathryn Pugh.
  2. NICE Workshop to be held Tuesday 16 January
    1. Dr Charles Shepherd reported on his meeting with Professor Mark Baker and others from NICE.
    2. Charles reported that the Chair and the Guideline Development Group had not yet been chosen. A decision was expected sometime in February. Dr Willy Weir commented that the Development Group should not include anyone who had been involved in the PACE trial.
    3. Dr Charles Shepherd said that diagnostic criteria were likely to be a big item of discussion at the workshop. Members spent quite a bit of time discussing diagnosis and definition.
    4. Hannah Clifton commented that the training of doctors about ME should be covered in the guidance. Dr Willy Weir added that early accurate diagnosis by the GP was so important. A lot of people who now have severe ME would not be so ill if they had been seen and correctly advised at an early stage. Dr Charles Shepherd agreed, but said it would be difficult to produce the evidence base for this. Treatment trials were almost non-existent. He suggested that all the charities put forward an agreed paper of recommendations.
    5. Clare Ogden referred to our meeting with Professor Diane O’Leary who had explained that to deny biomedical treatment was violation of an ethical right. We should ensure that right was not obstructed in any way.
    6. Dr Willy Weir referred to the problem of patients having to be ill for four months before a diagnosis of ME/CFS could be given. He would prefer the bar to be set at two months. At that point a pacing regime (doing very little) is appropriate, not vigorous exercise.
    7. Anita Williams expressed concern that schools were now insisting that children come to school even when ill. This would be dangerous for children with ME.
    8. Jane Colby recalled a study which had shown cellular changes in mice and rats after vigorous exercise. Dr Willy Weir confirmed that rodents infected with coxsackie virus, when exercised, experienced reduction of immunological function; whereas those that rested did not. This would apply to humans too.
    9. There was considerable discussion about the lack of services for children. Jane hoped the new NICE guideline would contain a separate section about children. She explained that the Tymes Trust could not support the current ‘fatigue clinics’ unless they were prepared to change away from current psychologically based therapies such as CBT and GET.Hannah Clifton commented on the lack of ME specialists of any kind. Dr Charles Shepherd suggested we should come to an agreement about what we want from specialist and hospital-led services – otherwise there was a danger that all ME services would be cut and nothing put in their place. Dr Willy Weir explained how pacing and techniques like mindfulness meditation helped patients. These should be recommended rather than programmes like Graded Exercise.There was considerable discussion about the role of GPs – for example they do not do home visits with the result that the housebound and bedbound never see a GP.
    10. The Chairman proposed we have another meeting at the beginning of February after the Workshop to determine how we should go forward. This was agreed.
  3. Royal College of GPs Conference – Glasgow
    1. Dr Charles Shepherd referred to the correspondence on this subject and the suggestions he had submitted.  He asked members to send him any further ideas as soon as possible. It would be helpful to have a speaker who is a member of the RCGP.
    2. Clare Ogden said she had been in touch with the organisers about a stand for Forward-ME. It would not be cheap. The Chairman suggested all the ME charities put in something toward the cost. Clare explained we would be allocated a space 2 metres x 2 metres – enough for a table, one chair and a banner or similar. The Chairman suggested we have display boards, with the Forward-ME logo across the top, to which posters could be attached (eg reMEmber’s poster on self-management and pacing). Hannah said suitable leaflets should be available too. Clare said she would check to see if Forward-ME could get the charity rate. Charles Shepherd said there should be someone in attendance at the stand to whom passers-by could talk.
    3. Tony Crouch said Helen Brownlie had suggested a video diary by someone who was currently ill rather than a presentation by someone who had perhaps recovered. Charles Shepherd said that was a possibility. However only one hour was allocated for presentations and a maximum of three speakers. Jane Colby backed the videa diary suggestion, saying that the effect of the Unrest film showed that seeing what severe ME looks like, rather than only seeing someone who is now well enough to address a conference, would create more impact.
    4. Charles Shepherd gave an update on the Parliamentary Debate. He, Hannah and Clare had met Lucy Wilson, the UK producer of “Unrest”. He had also spoken to David Drew MP who had offered to do a Westminster Hall Debate. However, he would need some assistance from other MPs. He asked the other charities to let him know of any MPS who were likely to be interested. Willy Weir suggested Yvette Cooper MP who had had ME. She had been his patient at one time.
    5. At this point the Chairman said time was running out, but she had two important points to make. First, Christine Harrison would be going to see ATOS the following week; if anyone wanted to raise any points with ATOS they should let Christine know. Secondly she had requested a debate on medically unexplained conditions (including ME) and her name had gone into the ballot for an ad hoc Select Committee of House of Lords. She should know the outcome by the end of January. (Her proposal was not selected).
  4. Next meeting – first week in February. Date to be announced.

Lord Agnew of Oulton, the Department for Education, has provided the following answer to your written parliamentary question (HL4650): Question:
To ask Her Majesty’s Government whether teachers who become Designated Senior Leads for Mental Health to oversee the approach to mental health and wellbeing in schools will be trained to distinguish children with anxiety, depression or behavioural problems from children who have myalgic encephalomyelitis (chronic fatigue syndrome) as a primary cause of their illness. (HL4650) – Tabled on: 11 January 2018.
Lord Agnew of Oulton:
It will be for schools to decide what training is needed by Designated Senior Leads for mental health. They can choose to train leads in recognising and responding to specific health conditions, including anxiety, depression or myalgic encephalomyelitis (chronic fatigue syndrome).
We would not expect leads to have specialist clinical knowledge or to make diagnoses. We expect that they will work closely with new Mental Health Support Teams and specialist NHS services to draw on expert advice and training on how to respond to different needs and ensure that timely referrals are made to NHS services if necessary.
The department will be supporting providers to develop training for leads through the Teaching and Leadership Innovation Fund. The department wants the training to focus on effective ways to set up and maintain a whole-school approach to mental health within which any conditions can be identified and specialist support provided most effectively.
Date and time of answer: 25 Jan 2018 at 17:46.

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