• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

NICE GUIDELINE ON ME/CFS WILL BE UPDATED! (Sep 20th 2017)

Seven7

Seven
Messages
3,444
Location
USA
It's not research. But it's still relevant because it demonstrates the problem with reviewing the research inappropriately, and what the results of a review will be when the bullshit is excluded.
I guess is a concise review of published literature so maybe the ME organizations can submit the acepted papers there as evidence ( the compilation work is already done), just a shortcut to submit a list of published literature to be considered.
 

Yogi

Senior Member
Messages
1,132

Wonko

Senior Member
Messages
1,467
Location
The other side.
Of course the problem now may well be, what are the guidelines likely to end up as after this review. Although removal of GET, in particular, and CBT would be a good thing IMO, I would like to see the whole no further testing thing addressed, and reversed (I am aware that it's possible that this is not actually in the guidelines, that it's just common practice, but a counter to common practice does, it seems, need to be put in the NICE guidelines to stop this completely unacceptable practice).
 

Cheesus

Senior Member
Messages
1,292
Location
UK

Cheesus

Senior Member
Messages
1,292
Location
UK
I'll do it all now.

Done. There were a few documents that were .docx downloads so I couldn't archive them. I archived everything else.

I am still trying to get the minutes from these earlier discussions - it has been escalated now so hopefully these will be available soon

Keep me updated so I can archive that too! My archiving finger is feeling itchy right now.
 

Yogi

Senior Member
Messages
1,132
The patient stakeholder comments are excellent. The so called "health professional" ones are so weak and thin in their responses.

Some important ones.

Looks like RC of Paediatrics is advocating for crooked Esther Crawley.

https://www.nice.org.uk/guidance/cg...er-consultation-comments-table-pdf-4602203536

Do you agree with the proposal to remove the guideline from the static list?


Royal College of Paediatrics


Yes

There will be new evidence.

Association of British Neurologists

Yes

We note that NICE is planning to wait for an updated Cochrane Review of Cognitive Behavioural Therapy which we agree with

Royal College of Psychiatrists

Yes

We support the view that the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) should be removed from the static list. This is because there is important ongoing research in the area that will be published in the next 3-5 years thus requiring active surveillance.

We support the request from NICE for an updated Cochrane review to include PACE data which may influence the outcome of future surveillance.

University of Manchester – FINE Trial

Yes

No comment

page132image38432
page132image38592

Do you have any comments on areas excluded from the scope of the guideline?

Royal College of Paediatrics and Child Health

Yes

We am aware there is new evidence regarding effective management for CFS/ME in young people which will be published very soon, and is highly likely to lead to a change in recommendations.

This is an important and but long document. Does it distinguish between adults and children. In children it is often called postviral fatigue and has a better prognosis.

Association of British Neurologists

No

No comments



Royal College of Psychiatrists

No

No comments

Royal College of Physicians

We would like to endorse the responses submitted by the Association of British Neurologists and Royal College of Psychiatrists


RCGP

Yes

  •  See question 1: There is new evidence since the publication of the guideline.

  •  Consideration of screening for Postural tachycardia syndrome (PoTS) to be included in

    assessment of people with CFS/ME. Studies have shown that up to 30% of patients with CFS/ME have PoTS (2). Almost 29% of patients with PoTS have been given a diagnosis if CFS/ME (3). Fatigue is the most common symptom of PoTS (91%). It takes a mean of 7 years for patients with PoTS to be diagnosed and in the meantime 50% are mislabelled with a psychiatric/psychological explanation for their symptoms.

  •  PoTS has many more treatment options than CFS/ME, and many PoTS patients are able to return to school, employment and enjoy an improved quality of life once correctly diagnosed and treated. This may reduce the financial cost of such patients upon the NHS (as many undergo multiple referrals, and unnecessary investigations before diagnosis) and on the UK welfare system.

  •  The assessment of CFS/ME patients could include enquiry about orthostatic intolerance and palpitations.

  •  Current NICE CFS/ME Guidance states that patients should not undergo a routine tilt table, however, an active stand test for those with orthostatic intolerance is a cheap and quick test and could identify patients who may benefit from more timely diagnosis and treatments not currently available to them.


    Do you have any comments on equalities issues?
Royal College of Paediatrics and Child Health

No answer

CFS/ME in children and young people is a very different condition to that seen in adults. For example, the controversial PACE study does not apply to CYP.

We suggest that the next revision of the NICE guideline be split into two distinct documents, for adults and CYP, otherwise there is a risk of clinicians incorrectly extrapolating adult evidence to CYP.
 
Messages
15,786
How much influence does NICE have over UK GPs, hospitals, etc?
Quite a lot. It's not binding, but most doctors in the UK use it as the basis for diagnosis and treatment. And doctors deviating from it get a lot of shit from the licensing board or whatever.

What are the changes likely to be?
If Oxford research is discounted, there should no longer be a recommendation for CBT or GET as treatment. If patient surveys are taken into account, GET should especially be considered dangerous.

It's unlikely that any real biological treatments would be recommended, because there really aren't any with a strong evidence base yet. But it might be possible to get the advice to avoid certain tests removed, such as B12, orthostatic intolerance, and infections.
 
Messages
2,391
Location
UK
I celebrate the decision to review and am very grateful for all the organisations who made this happen, but...

with the organisations representing Neurologists, Psychiatrists and Physicians all opposing update and clearly supporting the BPS model and GET/CBT, we are really up against it.

So who is actually going to do the review?

If it's the same people as before, change won't happen.
I'd like to know this too.
 

Cheshire

Senior Member
Messages
1,129
Though still adhering to a BPS model, BACME is asking for a review.
A bit muddy, and still far away from what we would like, but shows that even BPS professionals are now willing to clearly move away from the PACE model.

So still a BPS model:
Research has variously indicated CNS and autonomic abnormalities, chronic immune activation, and psychosocial factors, such as traumatic life events, which may be involved in pathogenesis, though this seems likely to vary between patients. We therefore advocate moving away from an organic versus functional dichotomy and instead describing the likelihood of neuropsychoimmunological interactions.

But
We believe that avoidance of the issues pertaining to diagnostic criteria and potential aetiologies does not best serve the patients and their health professionals. We are not expecting NICE to fully resolve such issues, but
we feel it vital to acknowledge their existence, and to do so within the guidance document that most people read. It is not sufficient that these discussions are embedded in large technical review documents.


Although BACME members are often involved in delivering CBT and GET, we believe the guidance and recommendations are too simplistic and do invite controversy. [...] The rationale behind CBT and GET, and their delivery by clinicians with specialist training. Common misperceptions are that these are prescribed primarily to treat psychological issues or inactivity/avoidance of exercise. Instead, the goals are variable, but may be considered rehabilitative, depending on the patient’s clinical situation and social context. Goals may include assisting a person to maximise their efficacy, functioning, well-being, acceptance, and social inclusion.

It would be worrying if this (slightly subtler) approach replaced the PACE trial theories and models of CBT GET.
 
Messages
2,125
It would be worrying if this (slightly subtler) approach replaced the PACE trial theories and models of CBT GET.
they are working on it:
http://www.priorygroup.com/blog/priory-bitesize/medically-unexplained-symptoms
"An example might be pain from stretching within the gut. The individual perceives this to be something to be worried about and they become vigilant for further feedback from the body that something is wrong."
"The autonomic nervous system can be helpful in explaining some symptoms, for instance irritable bowel syndrome."
"
The enteric nervous system is part of the autonomic nervous system. Discovered in mid 19th century, it was the original nervous system in early vertebrates, becoming more complex with evolution.
  • It has 500 million neurons is 9m long and stretches from oesophagus to anus
  • It produces 95% of all serotonin and 50% of dopamine and has been described as ‘the second brain’
  • It can act autonomously - sever the vagus nerve and the ENS continues to co-ordinate digestion
  • It feeds back to the brain, not vice versa - 90% of neural traffic along the vagus is from the gut to the brain
  • When we get a gut reaction - this is what we mean
  • Nerve signals from brain to gut can influence mood. Vagal stimulation is an emerging treatment for depression
  • In IBS, normal gut sensation is perceived as abnormal, this leads to distress, psychological distress affects the gut via the ENS leading to more symptoms and worsening mood via vagal feedback"
"
 
Last edited:

snowathlete

Senior Member
Messages
5,374
Location
UK
I think a no review decision would have caused a huge response from the ME community. I think there is no more appetite to accept the kinds of crap patients have put up with before. Potentially good news then. The community will need to keep up the pressure though, to make sure this is a fair and proper process and results in significant positive progress. I won't be relaxing yet.