UK: NICE Guideline: Rehabilitation for Chronic Neurological Disorders Including Traumatic Brain Injury

An email from NICE has highlighted that they are developing a guideline on Rehabilitation for Chronic Neurological Disorders Including Traumatic Brain Injury.

In theory, NICE, rightly or wrongly, recognise ME as a neurological condition, so I would assume that ME will be included in this.

Tagging @PhysiosforME @Gecko for info.

ETA:This is the relevant page on the NICE website, https://www.nice.org.uk/guidance/indevelopment/gid-ng10181

 

Interesting. Sounds as if it could be a can of worms that needs a bit a sorting out.
Did S4ME get an email as a potential stakeholder?

 

It wasn't an invitation to us specifically, it was a generic informational email about the latest guidelines they are developing that they send to all stakeholders who opt in to them.

 

Presumably if it does, then it would be best to simply xref to the new ME/CFS guideline.

 

That sounds good enough - presumably S4ME can apply to attend scoping as and when, if such things exist under lockdown. Unless of course interested parties have already muscled in and got started.

 

Well, I've sent them an email asking how to register for it as their website doesn't give me an option to do so. I'll see what they come back with.

 

NICE haven't come back to me yet but checking this page, https://www.nice.org.uk/guidance/indevelopment/gid-ng10181, it now has a link to register as a stakeholder, so I have just applied on behalf of the forum.

 

Good work.

 

I think this is definitely one to keep an eye on. The wording looks like it has changed to Rehabilitation for Chronic Neurological Disorders, Including Acquired Brain Injury, which clarifies it includes brain injury caused by non-external forces such as infections, autoimmune conditions, etc.

 

Hmm, I got no notification of any of this.

Date Update
12 November 2021 Scope published
08 June 2021 - 06 July 2021 Draft scope consultation
07 June 2021 Stakeholder list updated

The final scope can be seen here, https://www.nice.org.uk/guidance/gid-ng10181/documents/final-scope-2

Which does say
"Groups that will not be covered
• Disorders for which interventions are primarily focused on altering body structure and functions, for example isolated peripheral nerve injuries.
• Conditions for which there is already NICE guidance on rehabilitation, including stroke, dementia, myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome and post-COVID-19 syndrome."

 

That's not good.

I've been looking into ABI NTBI as our symptoms correlate remarkably. PEM, Hair loss, weight change, fatigue, altered sleep patterns and many more are all shared symptoms with ME and LC.

 

What is now included in the scope of this guideline.

"5) Functional neurological disorders

Functional neurological disorders can cause a range of disabling neurological symptoms, which include altered awareness, and motor and sensory changes. However, symptoms are not explained by a physical or neurological disease."

I've now re-applied for the forum to be a stakeholder.

 

Yes, I thought that was strange and was going to mention it. On the one hand, some argue ME/CFS is a functional disorder, and there is overall acceptance of research trying to prove it has a psychiatric component. However, the condition is removed from a guideline covering functional neurological disorders.

So far, I've read non-traumatic brain injuries can also impair the functional ability of nerve cells in the brain due to impact on cell structure that can't be viewed using gold standard CT and MRI brain imaging. However, I think that kind of injury is already accepted as part of established neuro and immune conditions such as non and autoimmune Encephalitis.

The mention of ME/CFS and LC within the guideline development seemingly implies both conditions involve brain injury with rehabilitation already provided. If so, surely both guidelines should mention brain injury as an underlying pathology?

*Edited for clarity.

 

Looks as if they were so browbeaten by the ME experience they got in quick to exclude it.
Except of course that there is no guidance for rehabilitation for ME/CFS - or maybe just guidance on avoiding it.

 

@Jonathan Edwards I am confused.

According to the reading I have done on acquired brain injury so far. Non-traumatic brain injury impairs the function of the brain due to its direct impact on cells throughout the brain. NTBI is acknowledged as a neurological condition and is, for the most part, simply referred to as Traumatic Brain Injury as it has the same effects.

I also spoke to Headway, and the triggering event seems to differentiate NTBI from PVS, given the same symptoms. Obviously, I am not a medic, and neither was the person I was talking to, but it sounds like ME infections do not impact people severely enough to cause cellular level damage. I was told the triggering event should have been severe enough to cause hospitalisation, such as in the case of Encephalitis...

Does that seem accurate?

*Edited for clarity.

 

I have no real idea how people use the term non-traumatic brain injury. I suspect it is used differently to suit different purposes. It could potentially cover all sorts of things but may be one of these code-words used to imply psychological cause.

 

It is 15 years since I worked in the field so the use of the terminology may have changed, but my understanding of acquired brain injury was an overview term for brain injuries/damage not present from birth or the perinatal period.

Traumatic brain injury results from external direct forces such as road traffic accidents, assaults, gunshot injuries, falls, sporting injuries etc. although will result in additional damage from internal shearing/rotational forces and bruising to the brain and swelling within the cranium.

Some examples for acquired brain injury not involving direct physical trauma, but producing similar problems, would be things like Herpes Simplex Encephalitis, or anoxic brain damage where the oxygen supply to the brain is interrupted.

 

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/

 

Good point. There is specifically no rehabilitation in the guidelines, and the exclusion is over having independent rehabilitation guidelines.

Amazing what people can do when they just don't care, all the rules are off and it doesn't even matter. Words don't even have real meaning, just a preferred interpretation based on circumstances.

 

I think the assumption for NTBI may be that it's over and done with and what is needed is getting the person moving again as best they can - 'rehab'. I don't see ME as being in that ball park.