UK: University College London hospitals (NHS)

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Treatment and rehabilitation of adolescents and children with complex conditions service (TRACCS)

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5. Treatment and rehabilitation of adolescents and children with complex conditions service (TRACCS)

Living with CFS/ME can be hard, but we are here to try and make it easier to get life back on track.

The service has been successfully treating Chronic Fatigue Syndrome (CFS) and Medically Unexplained Symptoms (MUS) for the past 16 years. We are part of a teaching hospital with state-of-the-art facilities and have a specialist team of doctors, nurses, physiotherapists, occupational therapists, psychologists, dieticians and social worker.

Our nationally recognised service helps children and young people (up to 19 years) who are living with CFS/ME, chronic pain, medically unexplained symptoms, non-epileptiform seizures and chronic headaches.

 

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Russell Viner Professor of Adolescent Health at the UCL Institute of Child Health

RCPC https://www.rcpch.ac.uk/about-us/our-team/professor-russell-viner


Viner also in "1999 'Sick and Tired'-


(Don't be concerned at this. It is too large a file for Google to scan. It comes from a reliable source) Google Drive can't scan this file for viruses.

 

Treatment and rehabilitation of adolescents and children with complex conditions service (TRACCS)

https://www.uclh.nhs.uk/TRACCS

Patient leaflets:
An introduction to Chronic Fatigue Syndrome (ME CFS)

so no need for PEM?

https://www.uclh.nhs.uk/patients-an.../introduction-chronic-fatigue-syndrome-me-cfs

 

16 years? Must have successfully treated tens of thousands of pwME in that time.

...and no one, not even the NHS, has heard of it, and adopted such a massively successful treatment nationwide? Not even when they were rolling out ME centers (which later closed coz..well.. they didn't cure squat)? Not even in the mad rush to treat LC? Not even with all the money that seems to be available to deal with LC worldwide?

When such a successful treatment modality could have been used to show NICE what wonderful, and effective, things CBT and GET are?

Coz.....there is considerable evidence against the dogma that CBT, GET and sleep hygiene are effective. So much evidence that they are no longer recommended treatments, in fact that GET is specifically recommended against.

Neither the NHS nor NICE accept that the approach is a valid one, that doesn't risk harm, let alone that it's so 'successful'.

My credulity is 'stretched'.

 

Homeopaths have treated millions of patients. This statement is exactly as true as the above.

Unfortunately, in medical language, treating something doesn't actually mean it did anything, it's clear that someone doing something, however useless, meets all the definition and nothing more is needed. At least when convenient, of course it's mostly arbitrary.

Predictably, the McDonaldisation of medicine has lead to an alignment of slogans: millions served. Served pseudoscience, served nonetheless.

 

The clinic is in effect run by Anna Gregorowski, clinical nurse consultant, with a PhD in: Yes you guessed it - treating Adolescents with CFS and is currently Chair of BACME!

Yes, the same BACME who said they are happy to support/work with (?wording) the 2021 NICE GDL.
CS has arranged a meeting with her and at least one other BACME exec member.

 

I have a referral to " Chronic Fatigue Syndrome & Fibromyalgia Service (RAS) - RLHIM - UCLH - RRV ", which came after initially being referred to the Royal Free Fatigue Clinic. This is the UCLH service website - https://www.uclh.nhs.uk/our-service...nic-fatigue-syndrome-and-fibromyalgia-service

Doesn't look super promising, it says something about the psychological dimension of the illness, but then when it talks about CBT it just says that the CBT is to help with coping, rather than to treat the illness.
The letter says that if I haven't heard from them by next Thurs 15th I should call them.
I couldn't find a thread about this specific service - it seems like it's a different service to the TRACCS. Anyone got any intel?

I'm mainly just looking for a diagnosis at this point, so I can take part in DecomeME and I suppose in case a proper thorough differential diagnosis ruled out / in some things that haven't yet been investigated.

 

I have heard only really bad things about this service, my impression is UCLH is one of the worst places in the country to go if you have ME. Also, steer clear of their PoTS / autonomic unit service if they refer you there : you will almost certainly come out with a “deconditioning” diagnosis, probably told that you don’t have an organic illness, and that there will be no medication to help.

I know you only want a diagnosis, so you may be able to get away with just getting a diagnosis & then asking to discharge yourself, if you’re not happy with their service.

UCLH can be really great for other diseases and conditions, but not ME.

 

Can confirm. I saw one of those UCL neurologists for POTS and the prescribed treatment was go to the gym. I was almost 100% bed bound at the time.

 

How does this relate to the long covid services UCH was/is running?

 

Yea that's a good question - I actually had some appointments at that UCLH / RLHIM Long Covid service around this time last year, I think they did diagnose Long Covid for me (I had ME before covid, but it got worse after having covid), but they were also quite "meh".. Not sure if it's any of the same doctors / how much overlap there is..
I had one appointment with a neurologist - Dr Patricia McNamara, and was offered an appointment with a Dr Christian Hasford, but by then I had decided to leave the UK and stop working for a while to see if that would improve things at all.

I can see that Dr Terry Segal seems to work at the UCLH Long Covid service - https://www.uclh.nhs.uk/our-services/find-service/covid19-clinics/post-covid-followupservice

 

I second all the above.

As @lunarainbows said, you could get the ME diagnosis and discharge, but if you do one day want to explore proper neuro help at UCLH, you can't have a ME diagnosis.

 

Oh, could you elaborate on that?

 

There seems to be a common theme within the neuro department at the hospital that patients diagnosed with ME/CFS have a non-organic (conversion) disorder; therefore, patient complaints do not need to be investigated as such. However, neuro symptoms are neuro symptoms, and if you see a neurologist specialising in conditions that cause your symptoms first, it would be negligent for the consultant not to investigate. The ME/CFS diagnosis can be used as a 'reasonable excuse' not to test or treat the patient.



[Edited for clarity.]

 

For some reason, the UCLH fatigue service may also reference Simon Wessley on the ME/CFS diagnosis letter they provide. Stating symptoms appear to be the same as depression. So that could go on your medical records for insurers/legal/employment to see.

 

https://www.s4me.info/threads/royal...apy-for-chronic-fatigue-cfs-aug-5-2021.21719/

 

Interesting, thanks. I think I know what (some of) the answer would be, but - conditions such as?