NHS CFS underlying pathology from the UK Royal Free Hospital Fatigue Clinic

[livinglighter]

I'm not sure where I should post this or how relevant the information is, but this is the handout I received in 2019 when the underlying pathology of CFS was explained to me at the Royal Free Hospital fatigue clinic, which was run by Immunologist Dr Murphy.

According to the therapist, the diagram didn't include everything about CFS, as a lot was still unknown, but at the time that was the current clinical awareness. I can't remember everything that was said, but the emphasis was placed on the autonomic and sympathetic nervous system deregulation. I didn't know what any of it meant at the time, but I asked what the cause was, and I was told it was still unknown. The therapist said it was as though some mechanism that acts a bit like a switch has gone off and is stuck.

I've done some recent digging around, and I can see the same diagram is in a book done by Dr Murphy, which raises even more suspicion from me, as she does a bad job of explaining it. It basically says the various body functions which under normal circumstances operate to establish health and equilibrium in the body are interacting with each other in a dysfunctional way, and the result is believed to be the symptoms of CFS/ME. If you look up the book on Google Books, you will see the vague explanation of the theory behind it, including what is thought to be chemical imbalances.

I always thought this was what CFS/ME was, so I was surprised to learn the syndrome was considered "being all in the mind" outside of the fatigue clinic.

The name of the book is; Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME by Bruce Fernie, Gabrielle Murphy

 

[lenora]

When exactly was this book written. Anything to do with CFS/ME quickly becomes out of date, although they're always useful as reference material. I use Osler's Web a lot and that was written at least 10 years ago.

ME groups in the UK should have the latest thinking of the NIH with respect to this illness. Researchers are putting out new material daily on the causes of our problems.....things seem to be getting narrowed somewhat. Whether the answer(s) will cover the entire population is: probably not. But work will continue and there will be a resolution at some point. We have so many diverse conditions. I understand the NIH is hard to work with, understand that you probably want to go about things the proper way, that's why I suggest a support group in your area.

I understand that the NIH is supposed to be moving away from the psychological consideration. Still, it will take many years and young doctors for this to be fully realized. Trust me, many people are targeted with the same problem here....I've been most fortunate in that I've always been taken seriously.

For the most part, we're too complicated for the average doctor. I wish you well. Yours, Lenora.

 

[livinglighter]

When exactly was this book written. Anything to do with CFS/ME quickly becomes out of date, although they're always useful as reference material. I use Osler's Web a lot and that was written at least 10 years ago.

It looks like the book was published in 2009. Dr Gabrielle Murphy is a doctor linked to the PACE Trial and the current bad NICE ME/CFS Guidelines. But I just wanted to share what should have been the shared understanding of what CFS/ME is within the NHS, but it doesn't seem like it's the case.

I understand that the NIH is supposed to be moving away from the psychological consideration. Still, it will take many years and young doctors for this to be fully realized. Trust me, many people are targeted with the same problem here....I've been most fortunate in that I've always been taken seriously.

I'm glad you have always been taken seriously. I've decided to receive medical advice and treatment from doctors who take ME seriously.

 

[lenora]

It looks like the book was published in 2009. Dr Gabrielle Murphy is a doctor linked to the PACE Trial and the current bad NICE ME/CFS Guidelines. But I just wanted to share what should have been the shared understanding of what CFS/ME is within the NHS, but it doesn't seem like it's the case.



I'm glad you have always been taken seriously. I've decided to receive medical advice and treatment from doctors who take ME seriously.

Hi @livinglighter....I don't mean "serious" in the manner meaning that I was cured, but more that it was obvious that something was very wrong (I have neurological problems, also) and each doctor would refer me to someone he/she thought could help. No, I don't understand why any doctor would treat a patient in such an abysmal way...., but I know it does occur.

I knew even from the beginning that I was taken seriously...that helped my self-esteem if nothing else. I wish everyone could fall under the same umbrella. Yours, Lenora.

 

[livinglighter]

I recently found this video where Dr Gabrielle Murphy explains the above model I posted from her fatigue clinic. She refers to it as the Psychoneuroimmunology (PNI) model of ME/CFS. The explanation starts towards midway / the end of the video. 2014 seems to be before she became affiliated with the PACE Trial and conducted biomedical research into ME/CFS. For some time, the RFH fatigue clinic was known as one of the best services due to the drugs she would prescribe/dispense and referrals made to other specialists, e.g. neurologists for POTS.

I think this model is still relevant given her background in immunology (HIV specialism). The model shows cytokines being implicated, and recently cytokines are being looked at as a biomarker for long-covid by Cambridge University.

 

[lenora]

Thanks @Living Lighter.....I'm having problems hearing on youtube lately. I don't know why, but even with earphones, there isn't much difference.

Probably time to send my computer in for servicing. I find that the less I do, the weaker I also become. It would be nice to find a happy medium....like looking for a real pearl in an oyster. Yours, Lenora.