lcmedata.org/ukdocs - webpage for Long COVID/ME clinics and doctors in the UK

[Liface]

A group of patients and I decided to make things more efficient for the community by creating the first-ever comprehensive listing for ME and Long COVID doctors and clinics in the UK.

http://lcmedata.org/ukdocs

We collated hundreds of comments from Reddit, Twitter, Facebook, forums, and group chats with only the most-rated doctors, pricing/visit info, and pros and cons from real patients.

25 doctors and clinics are listed, from NHS to private specialists, and pharmacies for LDN and ketotifen.

This is a living webpage and will be continually updated. Suggestions and updates welcome!

Note: the data was collected and organized by Highly Agentic LC/ME, a group of patients from tech and research backgrounds volunteering their time to give back to the community.

 

[Jonathan Edwards]

I would not recommend anyone consulting any of those listed to be honest. The fee for a single assessment is steep and I see no reason to think any of these people offer anything useful and many will offer misinformation and potentially harmful treatments.

 

[Nightsong]

I would not recommend anyone consulting any of those listed to be honest. The fee for a single assessment is steep and I see no reason to think any of these people offer anything useful and many will offer misinformation and potentially harmful treatments.

I would ordinarily agree with that but far too many pwME have problems for which some kind of "specialist" is required. They may need reports for social care or the DWP or their employer or an insurance agency from someone who actually understands how disabling ME/CFS is (even if they have weird mechanistic ideas and/or charge steep fees). They may be facing a sceptical local NHS GP; they may be in untreated pain. They may need surgery for an unrelated condition, and not be able to access the level of support they'd need to have it, and need someone to advocate for adaptations to be made. There are those who have feeding problems for whom the "care" available on the NHS is essentially "have you tried yoga?". Some of the people on the list have ideas that may paradoxically increase conflict with the NHS, but patients are left with nowhere else to turn. Given that there are no NHS specialists - what do patients do in those scenarios?

I really wish there were one or two sensible physicians with a genuine specialist interest in ME/CFS, but that came to an end after the 1990s/early 2000s with the establishment of the current network of psychobehavioural clinics. Changing this should be the among the first priorities of every charity & advocacy organisation, but all of them seem quite happy with ME/CFS being an illness managed by gaslighting therapists.

 

[InitialConditions]

Yes, there's very little they can offer and in my experience they end up focusing on stuff like pacing, diet, mind–body stuff, which is very expensive tinkering around the edges. This is the case even if the specialist paints themselves as purely in the 'biomedical camp'. You might get lucky with a prescribed med that helps reduce symptom burden.

But as @Nightsong says, there are legit reasons why pwME might need to see a specialist.

 

[Peter T]

I understand such a list is potentially problematic, however the UK MEA used to have a list of doctors with a special interest in ME/CFS. I don’t know how it was compiled.

I only used it once in 2000 when I needed a medical opinion to support of my ill health retirement. I saw consultant neurologist from the list who seemed to know his stuff. It made a big difference as my GP and the infectious diseases consultant, who had originally diagnosed my ME some years previously, declined to commit to any opinion on my long term prognosis.

 

[Jonathan Edwards]

Given that there are no NHS specialists - what do patients do in those scenarios?

The best bet i think would be to ask to be referred to a competent NHS physician who can check that the differential diagnosis has been covered. I can think of some competent physicians but will not name names. Beyond that I would take note of the NICE guideline and the FactSheets produced here and accept that pacing activities of daily living is all that we have reason to think is worthwhile.

I agree that it is difficult but in that list there are some physicians in their 80s who are sympathetic but cannot necessarily be relied on not to provide unhelpful folklore. Beyond that there are physcians and psychiatrists I would regard as potentially unsafe.

I resigned as director of Phoenix Rising* because I found it difficult to be in that role and to feel that the balance of recommendation and warning was reasonable on that forum. (There were tules that made it very difficult.) I may be erring on the side of caution but the older i get the more I think I should just be brutally honest. I have simple said that i would not recommend. Members then noow what I think.

* I do not have any such role here, of course.

 

[Jonathan Edwards]

I understand such a list is potentially problematic, however the UK MEA used to have a list of doctors with a special interest in ME/CFS. I don’t know how it was compiled.

Two thoughts. One is that things were different 25 years ago. There were quite a lot of competent physicians prepared to see ME/CFS cases. The other is that I hope we can do better here than the MEA does in terms of information.

 

[Felis Catus]

The best bet i think would be to ask to be referred to a competent NHS physician who can check that the differential diagnosis has been covered. I can think of some competent physicians but will not name names.

Genuine question: how can a patient ask for a referral that won't be refused for the sake of refusing?

I tried on multiple occasions and was never referred to any specialist, only given some (IMO lame) reasons why there was no need or no relevant specialist to see me. I've never tried to get a referral to a named specialist and I don't even know how to go about referrals outside my ICB. Honestly.

Both myself and people around me have had cases where our NHS GPs refused a referral but then private appointments revealed we should've been referred. Some are suffering with life long consequences. So I don't really have people in RL to give me examples which work and which I haven't already tried.