ME/CFS services in the United Kingdom

what is FS?

 

"ordering food in a cafe"

A cafe? Is someone transporting me there and back preferably via teleportation to avoid making me ill? Are they making the cafe silent - no other patrons, background music, drinks machines switched off? Are they serving something I can eat? If I can eat it, I'll order it. Sounds like a service I would sign up for - finally, something of some relevance to my life.

 

Fatigue Syndrome but Neurasthenia when it's officially logged within NHS SNOMED.

There is a problem in the clinics with the clinicians who are determined to reframe ME as a mental illness, block patients with ME having anything recorded explaining the physical aspect of the illness.

I’m trying to understand if the new guidelines in some way can prevent it from continuing.

 

= MUS https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/functional-symptoms/

More at link

 

This quote was from a children's clinic advice sheet.

 

Thank-you. But I don't see how that helps? It's also presumably hard to tell the difference between materials aimed at children and at adults, which is telling. I am aware that some people struggle ordering food and so on due to other conditions. I am not sure what relevance that has here, however.

I am just sick of being patronized, and the same applies to children.

 

I assumed it was intended to cover advice for children using school cafeterias. Of course, it is condescending for older children and teenagers too.

Edit: As someone who has supported SEN children in secondary schools, these places can be noisy and chaotic. However, the SENCO would normally make adjustments for vulnerable children to help them manage this, such as being able to leave their last lesson before lunch 10 minutes early so they can be first in the queue for lunch, or have a TA with them.

 

I couldn't use the cafeteria at school as that would have meant unnecessary walking, and I needed my energy not to faint in lessons. I used to lie on a bench by the lockers in the corridor and my friend would give me half of the peanut butter sandwich her mum had made her (since my own mother couldn't help with sandwiches at that time, having ME herself). At Sixth Form there was a snack trolley which used to come round the main hallway - huge upgrade - and I would lie on the hallway floor with the luxury of a tuna roll of my own.

Honestly, these people are a joke. Have they ever met a patient?

 

I suspect most of them have only met mild and moderate patients, and then only on their good days.

UK ME/CFS specialist services in general are unaware of the reality of their patients’ bad days, and totally unaware of the existence of severe ME.

 

They are aware of severe ME, but either cognitive dissonance or face saving
Leads to this being considered PRS. ...

 

PRS?

Sorry I struggle with acronyms, text speak or abbreviations.

 

I think you have just summed up my situation so accurately. That's almost spooky yet very much a relief that I am not mad.

I feel I have been misled for so long by 80% NHS HCPs over last couple of decades.
I have a distinct memory of Prof [blank] at Infectious Diseases Clinic in [blank] simply refusing to test me for anything since he said there was no point since there is no treatment anyway.

He even described me at end of consultation as being "a tough nut to crack". I had the temerity to want to discuss with him what he thought of J. Kerr and J. Gow's gene expression studies. He simply dismissed them as being irrelevant due to subgrouping. It didn't seem to enter his head that I might know a little bit of something. (I was a BMS in Haematology and Transfusion Science)

There you go , I daren't name and shame just in case they in NHS treat me in even worse manner.
Hence I no longer go to NHS unless I have no choice. In fact I no longer ask for help from anybody if I can possibly help it.

Very bad situation. However I am sure many people will recognise this type of thing.

I now hope desperately with the new guidelines, that GP services will improve . That improvement should happen as soon as the new science based knowledge has had time to spread and the CCGs catch up too.

There is obviously a huge knowledge gap and biomedical research on larger well controlled and selected patient groups is so important.

However I feel that there should be no need for any additional results coming in from biomed research for a marked improvement in understanding and respect shown. The new NICE guidelines really says that in terms of the past low or very low quality research.

I have finally had the confidence to verbalise to my GP that ME seems to me to be is yet another post infection disease and look forward to more appropriate objective biomedical tests being done perhaps.

I'm hoping this is in right place? I can't keep up atm.

 

Having seen that the web page for my local 'fatigue clinic' on the NHS Trust website (Barking, Havering and Redbridge University Hospitals NHS Trust) was still referring to 'Graded Activity/Graded Exercise Therapy' amongst other things, I wrote to them this morning (in detail - which has caused my already very flared flare to flare further) and I had a reply from them just now, apologising for not having the up-to-date info on their website and they are already changing it.

Thank you for your very detailed email. I want to apologise to you that the information on our website is out of date. I am working with clinical colleagues to make sure the page is up to date with correct information. We have made a few interim changes and will update it shortly.

https://www.bhrhospitals.nhs.uk/chronic-fatigue/

Still a long way to go as I asked pointedly for confirmation that they were no longer offering GET/CBT based on de-conditioning etc for existing and new patients (I've been on the wait list for >18 months for their services) which was not covered by their response, but at least GA/GET/CBT gone from the website for now, which feels like a minor victory

 

Make that most places I think. Very few doctors visit the really sick in their homes, or see the oxygen tanks or feeding tubes they need to survive. I recall one patient commenting to me that they contacted a specialist and explained they had to crawl to the door, and they were told they cannot have ME as it does not get that bad.

 

Closure of the ME/CFS specialist service at Queens Hospital Romford, Essex

"We have just received some disappointing information from the ME/CFS specialist service at Queens Hospital, Romford, Essex:

“The specialist myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) service from Neurology is closing and appointments to newly referred patients are no longer being offered.

“As background information, Amelia Goldsmith-Lister, Highly Specialist Occupational Therapist, is retiring next year. We have closed the clinic to new referrals although we will be offering follow up appointments until March 2022, after which the service will close completely.” "

https://meassociation.org.uk/2021/1...ist-service-at-queens-hospital-romford-essex/

 

https://ameliagoldsmithlisterpsychotherapy.com/about