What medical specialty should look after ME/CFS?

If rheumatology would be the best speciality for us, what would be the next step for getting us there? And how could we educate rheumatologists to make them actually useful to us?

 

Here's a link to the BSR's 2021 adult rheumatology referral guidance. Chronic fatigue syndrome is on the do-not-refer/refer-to-local-pathways list (p5) as is fibromyalgia. They recommend that ?fibromyalgia cases should only be referred where there is concern that inflammatory disorders need to be excluded (p4).

Historically in addition to ID there was also interest from a few immunologists, from James Mowbray to Dr Bansal. To be honest any step out of the CBT-GET/IAPT/liaison psychiatry world would be a step in the right direction.

 

Interesting to see that explicitly said (although I didn't get the actual link in the post).

The question came up at the Government Working Group but no action was proposed as far as I know. It does seem that someone needs to admit that a long term home for people with ME/CFS is needed. Apart from. Anything nobody is going to gain any real expertise or discover anything if no specialty clinics exist.

 

Good question and hard to answer.

We could write to Ian Bruce as the working party chair to ask how best to raise it with BSR. But it would only work nationwide if GPs saw the need to refer and wanted to pay.

The .out realistic hope I see is if DecodeME and maybe PrecisionLife come up with a finding. As soon as there is a lead academic units will want to have patients to study.

It may that to begin with there need to be a few supraregional centres with research taking more severe patients. That could perhaps be driven centrally by government.

 

https://www.rheumatology.org.uk/Portals/0/Documents/Policy/Adult-rheumatology-referral-guidance.pdf

 

I hope I 'm not disrupting posts but I wrote this while we were discussing in which specialism to place ME to offer my experiences.


We have all had such different experiences. I was first diagnosed privately by an endocrinologist. I had a hormone condition and I thought my symptoms were related to that so had been referred to endocrinology. He listened carefully asking the odd prompt question and at the end of an hour told me confidently that I had ME, not chronic fatigue, not CFS, plain ME. This was in 2008.( added)

He was kind and thoughtful, arranged for vit D blood test- it was low. I never saw him again because my GP, on getting the diagnosis, referred me to the local NHS CFS service, the one run by Dr Bansal. He also had an immunology input into a couple of the local hospitals. There was a waiting list but, during the waiting period, lots of information provided to read. I'm not sure how many area CFS services there were/are. This was the one based at Sutton hospital.

Once at the top of the list there was a sort of pathway to follow. I saw OTs and a psychologist and a specialist nurse. *There was no physio nor pacing up. The psychology sessions were about whatever you chose to talk about and the OT group sessions focussed on helping you to pace. We kept a record of how we spent time for 2 weeks, identifying whether an activity was high, medium or low activity in order to learn to spread high activity. The only criticism I had was that getting to the clinic then completing activities there was exhausting and contravened what we were being taught to do. ie we didn't pace. There was no resting during the sessions.

I returned in about 2016 at my request. Dr B had gone and the specialist nurse offered me physio looking embarrassed when I said exercise was contraindicated for ME. The clinic now headed by a psychiatrist had gone backwards and I'm grateful to Dr B for keeping me away from exercise. Anyone got any up to date information on that service?

Dr Bansal has recently been working by zoom from the Spire, Bushey, but his clinics were full last time I enquired. I am wondering if long covid patients have made their way to him. I have heard he will be retiring from there at Xmas but have no confirmation. Perhaps he will be continuing his research. I have been grateful for his empirically based help over the years and his immunology background has been especially useful when mast cell issues emerged.

edit*: I saw Dr Bansal once
edit 2: last line added

 

Ditto….