Question

I have had ME-type symptoms for well over a year following a viral infection. Unfortunately, my GP says that he doesn’t feel confident to make a diagnosis as he knows almost nothing about this illness. I have now been referred to a local ME/CFS service but find that this service does not diagnose ME. Why is this?

Answer

You highlight a situation that is both unacceptable and not unique to where you live.

The new NICE guideline on ME/CFS clearly states that GPs should be able to refer a patient to a specialist referral service for confirmation of the diagnosis and preparation of a care and management plan. However, most of these referral services do not have a physician who is the clinical lead and many of them do not have a physician who is actively involved in patient care. So they are unable to offer a physician-led diagnostic service.

I cannot think of any other medical condition where a multidisciplinary specialist referral service has been set up that is then unable to provide a diagnostic service. In many cases this also means that there is no drug prescribing service and no management of people with severe and very severe ME/CFS. This does not happen to people with multiple sclerosis, or any other serious medical condition and it should not be happening with ME/CFS.

This problem has been raised at a meeting with representatives from NHS England, who are currently preparing a clinical care pathway template for people with mild to moderate ME/CFS. We will continue to press them on the need for the referral services to follow the recommendations on both staffing and services in the NICE guideline.

More Information:

• As part of our Free Literature, we have a booklet on Diagnosing ME/CFS which may be of interest.