BazzaBoyle
Established Member
These assumptions may need its own thread, but I think it could be part of why the NHS won't include PEM on its website. Are NHS staff even diagnosing pwME with ME/CFS? My diagnosis reads standalone Chronic Fatigue Syndrome……
GPs tend to refer patients to fatigue clinics based on patient reports of persistent fatigue. They seem uninterested or bewildered by the many other symptoms.
My experience of fatigue clinics was the whole thing is about fatigue/stress/maladaptive coping management. The staff were uninterested in or didn’t understand many of the other symptoms. Sometimes, it seemed as if the protocol was to listen to a patient complain of symptoms and provide a listening ear or reassurance and answers that meant symptoms were not caused by physical pathology. Something that you might expect to take place in a FND clinic…..
I think it is also part of the reason why there is a typical pattern of pwME being seen by other specialities then having their CFS diagnosis questioned. ME/CFS symptoms are not the same as CF symptoms and the devil is in the detail, which other specialities are familiar with.
According to the UCLH website, they refer to the condition as ME/CFS so I anticipated that I would be treated as such. But I wasn't asked once about my symptoms, other than a brief mention of the GPs referral letter.
Basically the thrust of the diagnosis was that I was an overthinker so my brain was overworking and exhausting my energy supply and breaking down my cells (Apoptosis?) and creating "toxins" (RONS?) that were damaging my body and causing my symptoms. I can't say it was a discussion, because it was more like a lecture. I didn't know whether to laugh or cry by the end.
And after all that, there was no multidisciplinary care plan or proposal of how to move forward. Just these handful of separate referrals and a couple of book references. I think the UCLH service is swamped, and it feels like a factory production line where they get you in, give you a quick diagnosis, and then boot you out the door. I didn't feel there was any quality in the consultation.