From the October issue of The ME Association's quarter magazine, ME Essential, published this weekend.
A total of 25 ME charities and groups have now signed up to a statement repudiating the NHS Pus occupational health guidance for ME/CFS as "insulting to many people with this illness who have fought tooth and nail to keep their jobs and tried everything to get better".
The consensus was forged by MEA chairman Neil Riley in time for a recent meeting of the All Party Parliamentary Group for ME. It was there that NHS Plus director Dr Ira Madan agreed to meet with The MEA and Action for ME (AfME) to thrash out something more acceptable.
The guidance was one of a stream of ill-thought out ME/CFS guidelines from official bodies this year. It was condemned in the joint statement for supporting for the psychosocial model of ME, ignoring the World Health Organisation neurological classification of the illness and being based on flawed research.
Mr Riley and AfME chief executive Sir Peter Spencer persuaded Dr Madan to make changes to the NHS Plus leaflets which promote the guidance to employees, employers and health professionals.
Mr Riley is now sounding out all the statement signatories to see whether the proposed changes go far enough for them. Sir Peter declined to get involved in this further discussion.
“Getting 25 different organisations to agree a draft has been described to me as like ‘trying to herd cats’ but that is no reason not to try and make the effort”, said Mr Riley.
He praised the input and support of all those who contributed to the discussion over eight months and reiterated that The MEA would not endorse any revision unless it had majority support of the original signatories.
The NHS Plus guidance on ME/CFS (scroll down to find section on "Chronic Fatigue')