1. Guest, the 'News in Brief' for the week beginning 30th January 2023 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

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

Discussion in 'Other guidelines' started by Andy, Jan 5, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    18,698
    Location:
    Hampshire, UK
    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
     
    Last edited: Jan 5, 2021
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    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?
     
  3. Andy

    Andy Committee Member

    Messages:
    18,698
    Location:
    Hampshire, UK
    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.
     
  4. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,294
    Presumably if it does, then it would be best to simply xref to the new ME/CFS guideline.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    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.
     
  6. Andy

    Andy Committee Member

    Messages:
    18,698
    Location:
    Hampshire, UK
    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.
     
  7. Andy

    Andy Committee Member

    Messages:
    18,698
    Location:
    Hampshire, UK
    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.
     
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
  9. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    446
    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.
     
    bobbler and Andy like this.
  10. Andy

    Andy Committee Member

    Messages:
    18,698
    Location:
    Hampshire, UK
    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."
     
    Trish, Missense, Hutan and 3 others like this.
  11. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    446
    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.
     
    Last edited: Feb 7, 2022
  12. Andy

    Andy Committee Member

    Messages:
    18,698
    Location:
    Hampshire, UK
    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.
     
  13. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    446
    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.
     
    Last edited: Feb 8, 2022
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    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.
     
    Missense, Trish, alktipping and 11 others like this.
  15. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    446
    @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.
     
    Last edited: Feb 7, 2022
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    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.
     
    bobbler, alktipping, Michelle and 4 others like this.
  17. Ebb Tide

    Ebb Tide Senior Member (Voting Rights)

    Messages:
    221
    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.
     
    Joan Crawford, Trish, bobbler and 7 others like this.
  18. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    446
    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/
     
    alktipping and Peter Trewhitt like this.
  19. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    10,223
    Location:
    Canada
    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.
     
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    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.
     
    bobbler, Trish, alktipping and 4 others like this.

Share This Page