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I've got access to my fatigue clinic notes, I've yet to read through them properly but so far it's filled with reference to my central nervous system. So hopefully I can confirm you were referred to The Brain Charity because NHS England class ME/CFS as a Central Nervous System condition...

Quick update! After years of my family being perplexed by my ailing health and taking a backseat supporting approach, they are now proactive about getting me better medical. They are currently corresponding with doctors on my behalf. For once, different doctors at my surgery are starting to...

I also want to suggest keeping an eye on these similar-appearing brain-related conditions and possessing some insight into Brain injury, because the non-Traumatic invisible kind (nTBI) that is triggered by injuries to the brain not caused by an external physical force to the head are at threat...

The bottom line is we need more studies......

Coma is actually a head injury. He also suffered a coma as a result of Covid-19. The rehab centre he was flown to discussed traumatic brain injury as a result of the brain imaging they carried out. They found white matter legions on his brain. The clip was quick but it might still be available...

I'd say it depends because PCS patients are also told to pace and carry out activity below a specified anaerobic threshold. It's the same technique provided to me by my ME/CFS specialist. A rehab centre might use similar techniques for both conditions if they recognise the same symptoms. It...

I understand what you're saying. It is just very frustrating to accept that GP management with ME specialist input is the best we have at the moment when compared to other similar conditions. But if it's the best way to prevent harm, then it is the best way to go.

Perhaps it's a way for fatigue clinics to wiggle out of providing a care plan. It might be argued that mild-moderate and stable patients do not have the needs required. I think gaining clarity of all service provisions CCGs can fund is fundamental in putting the guideline into practice for...

Perhaps she also sees a difference because those patient groups are likely on symptom stabilising medication.

I also recall BACME's position paper stating research indicates cellular metabolic changes may be a feature of ME/CFS. https://www.bacme.info/sites/bacme.info/files/BACME%20Position%20Paper%20on%20the%20Management%20of%20ME-CFS%20October%202020.pdf

It does look like most CCGs still only fund ME/CFS specialist services to carry out self-management techniques for mild-moderate patients. https://www.birminghamandsolihullccg.nhs.uk/your-health/treatment-policies/chronic-fatigue-syndrome#:~:text=Chronic fatigue syndrome (CFS) is,to it as...

Thanks for pulling up more information @adambeyoncelowe it’s interesting stuff. Personally, I am wondering if I have been misdiagnosed or if a diagnosis is missing, as I have too many brain injury hallmark symptoms that no one with ME/CFS I’m aware of shares with me. My brain related symptoms...

I know, but the brain is being mentioned amongst ME practitioners. Recently someone else was signposted to a brain injury charity after requesting a NICE recommended ME/CFS management plan at the fatigue clinic.

It’s best to stick with symptom management described in the current guideline if the rehab centres are will end up providing dangerous GET. Hopefully GP’s will use the expertise of ME specialists to do so. My own GP doesn’t have a clue on how to manage my symptoms, but without agreed pathology...

The guideline does cover severe and very severe patients it just doesn't specifically refer to the specialist rehabilitation medicine services and exercise medicine services for their symptom management. Privately I have seen two ME/CFS specialists who ran NHS fatigue clinics and secondary care...

I acknowledge the significant improvements of the new guideline. Yet some services for patients with complex and very severe ME symptoms are not referred to within the guidelines as The Royal College of Physicians or Dr Turner-Stokes has pointed out. Last month, I called a ME/CFS fatigue clinic...

Can everyone who carried out GET at a UK fatigue clinic share what they were told ME/CFS is? Part of my intro to GET involved explaining the pathology of ME/CFS and I'd like to know what everyone was told. My fatigue clinic therapy records have been shared between various health...

Thread split from UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion For those who want to share personal experiences on this topic less publicly there is a thread in the members only area here. ______________ I used to think it was unique. But I am starting...

Agreed. I've asked for it to be moved. Next is finding out how straightforward it is to secure CCG funding.

Perhaps they also aim to spin the false narrative to bring NICE’s reputation under disrepute for not abandoning the guideline as requested. I recall the FOI saying something like keeping the guideline would risk its credibility.