Search results

Moved post This post may be taking the current discussion slightly off track, but I didn't intend it to as my first immediate thought when reading the opinion piece was the RCP's refusal to champion the new guidelines has influenced such propaganda, so I thought I would check to see if they...

When it comes to non organic causes is ME/CFS always referred to as CFS? I’ve noticed ME/CFS is only referred to as ME within the NHS England neurological conditions website. I wonder if they separate the names depending on whether they consider the cause organic vs non organic.

I’ve noticed the NHS is not relenting and the CKS is written in a way that casts pure confusion. The different diagnostic criteria have been discussed a few posts back and that is what I was told by the Autonomics lead is the first problem. People with CFS/ME have ended up being different...

I agree Mithriel. As far as I see it, pro psych research into ME is favoured to fit the cost-cutting agendas. Given my own experience of attending ME/CFS specialist services. NHS England has pretty much handed over their clinics in support of attaining skewed clinical evidence for patient care...

Moderators, please move my post if it takes the original discussion off track. However, I feel it's necessary to mention the following observations I've made so far causing my uncertainty about why ME and LC are groups not covered. Having done more reading about Acquired Brain Injury, NTBI is...

I should also add non-Traumatic Brain Injury (nTBI) is more often referred to as Traumatic Brain Injury (TBI) or Acquired Brain Injury (ABI) without the distinction, so it appears to be covered less extensively. A bit like NICE’s omission of mentioning indirect head injury within the current...

@Keela Too is correct. Sorry for not clarifying the abbreviations.

I agree, and you honestly also can't miss the similarities between ME/CFS and ABI. From my reading of various sources, it feels like ME/CFS has been syphoned off Acquired Brain Injury due to it not being recognised by neurology, and NTBI can't be viewed using brain imaging. I made a second call...

As the title suggests, I am currently seeking named recommendations of Neuropsychologists (ideally ME/CFS literate) for assessment / evaluation to be carried out. I'm UK based and would prefer someone close by, but the practitioner's understanding of ME/CFS as an organic neurological...

It looks like someone is back in the business of undoing biological medicine.... Which way this guideline goes will be telling. The law firm’s advice says FND is treatable, but it doesn’t name the secret treatment. My bet is CBT and graduated activity.

This information on how to ‘tackle’ the rise of FND has been taken from a law firms website. The tone and approach is eerily similar to a well known insurance advisor. Blame is now being placed on doctors and case managers for perpetuating the idea that the patient is ill due to organic causes...

For mentioned reasons, I thought it was just another unproven new age theory. I’m surprised to see it recognised by NICE as part of established neurology. The lengths these people will go to have no ends.

Interestingly, in the case of 'FND Acquired Brain Injury', a lot more support, rehabilitation, and medical care are offered. It seems possible the excluded conditions 'disclaimer' in the scope indirectly implies ME/CFS and LC are the two possible acquired brain injury conditions. The new NICE...

@Hutan Would FND then be considered physical as in the case of the above?

There is something called Hypopituitarism.

Apparently, people with Acquired Brain Injury have reported being first misdiagnosed with ME/CFS.

I am not sure if dieticians can test for possible underlying neuroendocrine hormonal imbalances causing weight gain, which I would want if it were the case. I'll discuss the matter with the GP, but going straight to a dietician may miss out on relevant testing.

Good point! I think the online document may be helpful as it has some pathology headings for managing symptoms, unlike the new guidelines, unless I've missed where it is allocated. My doctor doesn't seem to currently know what referrals to make. Eg. if I report weight gain do I need to see an...

I've read NTBI is now considered as injuries caused by internal forces like the ones you mentioned above. I was going to ask my doctor why ME isn't being treated like an NTBI. https://www.matrixneurological.org/what-is-an-acquired-brain-injury/

In my attempts to help my GP help me, I came across a NICE Evidence page outrightly calling ME a physical illness with information on identifying and managing the symptoms. https://www.evidence.nhs.uk/document?id=2193067&returnUrl=search?q=myalgic+encephalomyelitis...