ME Research UK

ME Research UK joined other charities and those affected by ME/CFS in welcoming the long-awaited review of the NICE Guideline on ME/CFS.  Given the concerns expressed by many about the scope and content of the current Guideline, this review is vitally important and ME Research UK, as a stakeholder, has submitted its views to NICE during its consultation period.

We agree that it is important to listen and understand the views of a range of experts in order to ensure that the revised Guideline provides clarity for everyone who is affected by it – patients and clinicians – but the Guideline must be based on the best available research and the replacement Guideline written with objectivity.

ME Research UK wishes to express its disappointment with the current appointment of a comparatively small number of members of the ME/CFS Guideline Committee who have expertise on the biomedical basis of ME/CFS when compared to those whose background appears to favour the bio psychosocial model. Given the increasing evidence of a biomedical origin of the illness and the current uncertainty, for example, of the soundness of the PACE trial, this is to be regretted. 

We look forward to following the progress of the committee with interest and we hope that the views of those with biomedical expertise are heard and that the revised Guidelines will improve the situation for the many, many thousands of people affected by this illness.

In the meantime, ME Research UK will continue to focus our efforts on funding biomedical research into ME/CFS and providing the scientific evidence needed to understand this illness.