Forward-ME Group Meeting – Minutes 26th November 2020

Present: Margaret Mar (MM), Tony Crouch, Janice Kent, Paul Worthley, Nina Muirhead, Sue Waddle, Christine Harrison, Sam Bromiley, Susan Henson-Amphlett, Simon Chandler, Natalie Hilliard, Helen Winning, Willy Weir, Louise Crozier, Carol Monaghan, Jon Davies, Janice Johnson and Charles Shepherd

Apologies: Nigel Speight and Debbie Burgess

1: Welcome and introductions: MM welcomed all to the meeting. 
2: Minutes and actions from the last meeting:
Minutes were agreed and thanks given to ME Association for work on the website.
No matters raised from the previous meeting.  

3: NICE Guideline:
MM went through the draft response by page and line and invited comments or additions. The following comments were raised:

  • Comorbidities are often harder to manage and need further monitoring.
  • Should there be the addition of a penalty if parts of the guideline are not followed.  
  • Important that patients have the choice whether to use a specialist service or stay within their GP. 
  • GPs do not have specialists within their infrastructure currently so there would be further need for training. 
  • GPs do have special interests and as M.E. is a common condition there should be one in each practice.
  • Differential diagnosis is not being covered. Misdiagnosis is a major problem when people are poorly assessed. 
  • Serious omission to not have baseline investigations listed which could pick up other conditions. 
  • Better referral tools are needed on the diagnostic screen to ensure patients are sent to the right person.  
  • Wording on training should be strengthened to ensure it is the right type of training.
  • The wording around ‘personal management plan’ should be strengthened to ensure it is mutually agreed with the patient. 
  • The section on CBT could be misinterpreted and used inappropriately. 
  • In the section on training, it should state that all health and care professionals providing specialist care should be aware of the need to do a full systems inquiry when seeing patients. 
  • It is not mentioned that M.E. is classed as a neurological disease.

Action: It was agreed that MM would make the changes requested to the form and circulate to members for approval. This will then be displayed on the Forward-ME website. 

4: DecodeME:
MM informed the group about the change in the management team of DecodeME. The London School will no longer be involved with the team at Edinburgh taking on the responsibility. We do not think it will have a large impact on the study.

5: Other research:
Louise Crozier from ME Research UK said they have approved a further project which is being finalized. The latest funding call had a deadline in early November  and they are reviewing applications from Australia, UK, Belgium and Germany with the total requested being £900,000. A further funding call will be announced next year. 

Nina Muirhead said they are about to launch some international research in the form of a questionnaire. It is piloted by severe patients and looks at their quality of life and that of their family members. 

6. DWP:
CH is forwarding negative experiences to the DWP to be looked into. The DWP are looking into extending telephone interviews which could be beneficial to people with M.E. This means they can stay in their homes without the long journeys to the assessment centers. 

A meeting has been had with Capita and DWP early in November to talk about M.E. and reiterate the need for more paper-based reviews. 

Audio recording of assessments are being made available but only when requested by the claimant. Some claimants may be invited to a video assessment, which is being trialed. Home visits are being considered in exceptional cases with full PPE being used. 

We have asked them if they will stop using Capita and IAS in Scotland. We will see how that evolves as DWP typically does not like in house services. CM confirmed that they wish to move away from these companies in Scotland.

No meetings now until the Spring.

Minutes in full (and all previous Minutes) can be read on Forward-ME’s website.

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