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….

 

Absolutely not rehab, that would be the worst. To a man with a hammer, everything is a nail.

What we need for the moment is specialist/ consultant general physicians with the time to listen and think, and experience of managing chronic illnesses. Until the precise mechanism is elucidated, then we will possibly move home.

 

Re rheumatology: my experience of doctors from a wide range of specialties is that rheumatologists were the worst/most dangerous. I have seen three rheumatologists.

The reason I say dangerous is that all three jumped to exercise as the solution, even the one who was asked to see me because of new pain in loads of joints bilaterally while doing GET. Not muscle pain due to exercise, that was negligible because of how low the level of exercise was and how gradually it was increased. (Spoiler: it resolved when GET was discontinued.)

The other thing is that one (possibly two) simply regarded me as having fibromyalgia, not as well as, but instead of ME/CFS and was adamant that I would be better in 6 months if I just gradually increased exercise. That one was considered by one of the others to have a special interest in "chronic fatigue". They don't. They have a special interest in fibromyalgia. And that happened to be the most abusive of any consultation I have had.

None of the three gave a fig that increasing exercise had made me worse a number of times. The particularly horrific one said I was like an obese person who won't decrease their food intake. Took me a while to figure out what they were getting at amidst the rapid-fire abuse given that I'm underweight, but I think it was that I just stubbornly refuse to do what's best for me. I can only imagine the level of abuse they would reach with someone who was overweight or obese.

If we want to be endlessly lectured about deconditioning, and the only treatment to be exercise, and ME/CFS to be retired in favour of a larger fibromyalgia empire, rheumatologists would be an excellent choice, based on my experience.

 

What are thoughts with “immunology”? I’ve never seen an immunologist myself, but since it appears the immune system likely has something to do with ME, and I’m guessing immunologists aren’t as conditioned as neurologists to psychosomatise (via FND proxy) they might be a relevant specialty?

 

I'm not sure the specialism is what matters most at the moment. It's the leadership.

I think I'd settle for any type of specialist who wants to understand ME/CFS, is capable of attentive listening, and aims to establish a knowledge base, not decide which set of pet theories to adopt.

 

Though it would change everything if we can get that attitude into a speciality, and they “adopt” ME, start properly teaching it to med students in said speciality etc.

 

I've seen a few doctors who had a good knowledge base and they treat pain and sleep.

 

Dr Bansal who ran an NHS ME/CFS clinic at St Helier hospital in Carshalton is an immunologist. When he retired from the NHS the ME/CFS clinic closed and patients like me who saw him in his general immunology clinic were discharged. When I asked him if it would be possible to recruit an immunologist who would be willing to continue to see his ME/CFS patients, he told me that if running an ME/CFS clinics or accepting ME/CFS referrals was a requirement of the job they wouldn’t have been able to fill the post.

[Edit: further to post above: yes, Dr Bansal is retiring from private practice at the end of this year.]

 

It looks to me as if the climate of opinion and the policy making of specialties is at present so awful that there isn't a lot of point in hoping for a home. As Kitty says, we need a change in leadership.

Maybe we have to wait for a science lead to raise physicians' interest.

 

Reading the accounts here, I think you're right.

It's just unbelievable how bad this has got for PwME.

Literally in every medical consultation or encounter I have now, I have no idea whether the person in front of me thinks I'm doing this to myself.