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Dr David Tuller: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure

Countrygirl

Senior Member
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5,515
Location
UK
Trial By Error: NICE Draft Rejects GET, Lightning Process, and CBT-As-Cure
10 NOVEMBER 2020
https://www.virology.ws/2020/11/10/..._2XOFX0Eh3Lnvs-zglOjd3NsghN-x7XC5PTyaZVhKtpo4

By David Tuller, DrPH
The draft of the new ME/CFS guidance from the UK’s National Institute for Health and Care Excellence is out–posted just after midnight, London time, on Tuesday, November 10. This is the headline: The draft represents a repudiation of the GET/CBT paradigm and the deconditioning hypothesis.

Here are key take-aways:

*Graded exercise therapy, other interventions based on the assumption that deconditioning plays a causal role, and the Lightning Process are explicitly NOT recommended.—they fall under a “do not offer” category.

*Cognitive behavior therapy as a cure or as a treatment for the illness itself is explicitly NOT recommended.

These positions have nuances. While GET is disavowed, the draft provides guidelines for physical maintenance and physical activity programs. While CBT-as-cure is out, the draft includes guidelines for providing CBT as adjunctive care for patients seeking psychological support and/or help managing their symptoms.
Many will object to some language and phrasing or find it to be ambiguous. Others will argue that proponents of GET and PACE-type CBT could cite passages selectively in an effort to bolster their claims. Certainly stakeholders on all sides will deconstruct the draft and submit their comments over the next six weeks. I’ll certainly write more about the draft and subsequent developments in the next few months.
Not surprisingly, the Science Media Centre has rounded up some of the leading lights of the biopsychosocial ideological brigades to offer comment—Professor Sir Simon Wessely, Professor Michael Sharpe, Professor Trudie Chalder, Professor Alastair Miller and Professor Peter White. I’m not going to bother quoting any of their comments here. They bleat in protest at the content of the draft, once more citing their flawed body of research. .
 
Messages
157
I am very disappointed but not surprised by the new draft guidelines. Never mind how it ignores alot of the latest research into different aspects of this biological illness. Does it recommend any new resources for improving the treatment/care of pwME ? NO.

Many pwME have a hard time of it accessing disability benefits. No surprise really as this government and its repressive extension the DWP have been found guilty of systemic discrimination against disabled people by a UN report 2 years ago. Will pwME be provided with specialist help to access disability benefits? NO

Will more specialist centres be set up to help pwME? NO Yet it calls for specialist services to work with pwME and draw up management plans. The draft does not acknowledge the effect of Tory austerity upon the NHS. I live in West Yorkshire (pop 1.9 million) where there is one specialist centre based in Leeds. It is difficult to get a referral there.

The draft calls for better education of health professionals. Who is going to provide this? There is no mention of the extra resources needed to do this. Why can't ME be made a compulsory part of the 7 year training that medical doctors undergo? My daughter's friend recently qualified as a GP and she says that ME wasn't mentioned once during the 7 years of her training!

I could go on and on. The fight for better life outcomes for pwME continues.
 

BrightCandle

Senior Member
Messages
1,171
If anything this draft is sort of a license to completely ignore ME/CFS patients. By removing GET and CBT and not filling that gap with anything towards symptom relief as a sufferer I am in the same damn position I was in before. They won't put more people in a wheelchair with GET but at the same time they will basically tell them to have an activity plan (Pacing) and that is it. Some nod to conditions that present as ME that can be diagnosed and solved would be nice as would some symptom relief recommendations. Its better but the effect on any patient who knew the harm of GET/CBT is the exact same, doctors are constrained by NICE to do nothing.
 

godlovesatrier

Senior Member
Messages
2,577
Location
United Kingdom
I don't agree. I think removal of GET is a major step forward. NICE aren't going to introduce new treatments, that can only come from scientists and doctors. Personally I think changing guidelines that are used by everyone is a major step forward. Whether it will work out that way over time is down to a myriad of different things. But I'm more hopeful than I have been and I'm not often that hopeful where this disease is concerned.
 

Wishful

Senior Member
Messages
5,852
Location
Alberta
By removing GET and CBT and not filling that gap with anything towards symptom relief

What symptom relief is there to offer? We have treatments that work to some degree for a few people, but no way of knowing which ones are worth trying for each individual. Getting rid of bad recommendations is the only thing they can do at this time, aside from recommending more resources be put towards ME research and education, and that might be outside the scope of NICE.
 
Messages
157
What symptom relief is there to offer? We have treatments that work to some degree for a few people, but no way of knowing which ones are worth trying for each individual. Getting rid of bad recommendations is the only thing they can do at this time, aside from recommending more resources be put towards ME research and education, and that might be outside the scope of NICE.

Sorry but I strongly disagree. NICE should and could do alot more. The draft fails to mention the lamentable failures of itself and other health bodies when it comes to the dire lack of specialist care or pathetic amounts of money that have been invested into ME research over the last decade.. It ignores much of the latest science on different aspects of the illness. Look at the issue of pain. I interviewed Professor Jo Nijs recently. His team are publishing work that study the link between epigenetics and chronic pain. Their work points to neuro-inflammation and diet as potential causes of chronic pain in pwME.

The draft talks about education of health professionals. Where are the concrete proposals for putting this into practice? Does it mention the extra resources needed to do this? I could go on.

I want my life back but this draft guideline offers no prospect of that what so ever.
 

livinglighter

Senior Member
Messages
379
Ongoing fatigue in 70% of Coronavirus patients at UCLH and RF Hospital has been a reoccurring story all morning on BBC News.

I was going to say perhaps the studies into the cause of Post Covid will open up studies that show the same/similar issues we face. Then I read the UK governments response to a Long Covid inquiry.........

https://committees.parliament.uk/writtenevidence/12345/pdf/

Despite the considerable amount of bio scientific research carried out on ME, it says "The overlap with myalgic encephalomyelitis (a syndrome of profound tiredness, generalised pain and difficulty functioning, probably due to several different underlying causes) is unknown."

(ME) A syndrome of profound tiredness, generalised pain and difficulty functioning????? How about CORRECTLY aligning it with all the other symptoms of Long Covid listed, such as "brain fog", inflammatory bowel disease, fatigue and breathlessness, palpitations or dizziness from fluctuating blood pressure, chronic pain, depression or anxiety.

I think we may need to go to press/consult with ME/CFS specialists and organisations for some form of action...... I'm not sure what the strategy for pwME to be treated with appropriate medical care is at this rate.
 
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Skycloud

Senior Member
Messages
508
Location
UK
NICE should and could do alot more. The draft fails to mention the lamentable failures of itself and other health bodies when it comes to the dire lack of specialist care or pathetic amounts of money that have been invested into ME research over the last decade.. It ignores much of the latest science on different aspects of the illness. Look at the issue of pain. I interviewed Professor Jo Nijs recently. His team are publishing work that study the link between epigenetics and chronic pain. Their work points to neuro-inflammation and diet as potential causes of chronic pain in pwME.

The draft talks about education of health professionals. Where are the concrete proposals for putting this into practice? Does it mention the extra resources needed to do this? I could go on.

I understand your frustration and disappointment, and there is much we need. However the remit of NICE is very specific and limited and it just doesn’t include some of the things you want to see.

For example, t’s not the job of NICE to produce proposals for education, and the committee do not have the authority, resources or expertise to do so - that is the job of medical and healthcare educators.

(edit - to remove text better posted in another thread when/if I can.)
 
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livinglighter

Senior Member
Messages
379
I’m really grateful to the patient reps, andCarers, and expert witnesses Prof Edwards and Dr Muirhead and others like Drs Shepherd and Weir who have (so far) fought off attempts to keep the status quo. I can imagine it’s been a hard slog for some of them.

BPSers aren’t going to take the draft lying down, and there’s still an implication in there that patients can ‘improve‘ with CBT ( no evidence for that!). And why CBT? There are other supportive therapies.

Lots for stakeholders to respond to.



I understand your frustration and disappointment, and there is much we need. However the remit of NICE is very specific and limited and it just doesn’t include some of the things you want to see.

It’s not the job of NICE to produce proposals for education, and the committee do not have the authority, resources or expertise to do so - that is the job of medical and healthcare educators. Nina Muirhead (expert witness to the NICE committee) and others are making some progress in bringing about change in education as are groups like Physios for ME. We need to support people like them. The need for education is flagged up in the draft, as you say, and will hopefully be in the final guidelines - I think that will increase pressure for change.

Also, NICE‘s job is to make recommendations for treatments that are supported by a good research base ie well conducted, replicated studies showing benefit. The problem with too much of the biomedical research into our field is that the studies are small and have not been replicated by other research groups, including as far as I’m aware, the research you have mentioned, however promising that might seem. It’s just how it is. The biomedical research in our field is inadequate.

So we need more research, and larger trials and replications of existing promising studies. It is frustrating. On the other hand, look what not being careful about evidence has done to damage people with ME for the last 30 years - we deserve treatments based on good quality, replicated research just like every other condition that NICE produces guidelines for. It’s a major achievement to see GET removed and that was done by pushing for the same standard for evidence that is expected for pharmaceuticals, and for other conditions. I think that’s good for us - it means less crap, more pressure for biomedical research funding and an open research field going forward.

edit - for clarity

@Skycloud Thanks for putting things into perspective. Of course I am also truly grateful to all those involved in reforming the guidelines as well. I'm slightly nervous that ME/CFS will again be left in the dark. But as you said we do deserve treatments based on good quality, replicated research just like every other condition that NICE produces guidelines for. Does that mean raising further awareness?
 

Rufous McKinney

Senior Member
Messages
13,467
I am very disappointed but not surprised by the new draft guidelines. Never mind how it ignores alot of the latest research into different aspects of this biological illness. Does it recommend any new resources for improving the treatment/care of pwME ? NO.

I was shocked to find this statement in the guidelines:

1.11.29 Do not offer any medicines or supplements to treat or cure ME/CFS.

:bang-head::bang-head::bang-head:

The guidelines should state the exact opposite. "As studies confirm potential treatments, ensure patients receive them in a timely manner."

But then: where are the studies? Hopefully somebody will soonly conduct some.

This just is- so strange. :sluggish::sluggish::sluggish:
 

andyguitar

Senior Member
Messages
6,656
Location
South east England
The guidelines should state the exact opposite. "As studies confirm potential treatments, ensure patients receive them in a timely manner."

But then: where are the studies? Hopefully somebody will soonly conduct some.
If,in the future, there are treatments that are proven to be of use then they will be offered. The standard of proof will be no higher or lower than for any other illness. The NICE guidelines can add treatments at any time. You dont have to wait for the next review in 10 years time.
 

wabi-sabi

Senior Member
Messages
1,553
Location
small town midwest
I was shocked to find this statement in the guidelines:

1.11.29 Do not offer any medicines or supplements to treat or cure ME/CFS.
I think what they are trying to get at is that while we can treat some of the symptoms of ME/CFS like pain, fatigue, orthostatic intolerance, there is no treatment (yet) for ME/CFS itself. Anyone who tells you they can cure or treat ME/CFS (instead of just the symptoms) is selling you snake oil and needs to stop.
 

Rufous McKinney

Senior Member
Messages
13,467
Anyone who tells you they can cure or treat ME/CFS (instead of just the symptoms) is selling you snake oil and needs to stop.

So do we in fact cure diseases, generally speaking?

I'm thinking- hardly anything is technically cured.

and it seems Wikipedia agrees with me. Regarding CURES: it says this

"Two infectious diseases have successfully been eradicated: smallpox and rinderpest. There are also four ongoing programs, targeting poliomyelitis, yaws, dracunculiasis, and malaria."

Here, they discuss how "cures" are in fact almost non-existent.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5145017/

Our medicine is not about cures, and is not set up to find cures.
 

Rufous McKinney

Senior Member
Messages
13,467
Yes, we do. All the disease we classify as acute are ones we can cure

I do think the laptop flunked producing an answer by focusing only on infectious diseases.

We cure Appendicitis. that one can be cured. Cancer is not considered "cured".

Maybe I was cured of my ongoing tonsilitis as those were removed.

Our pharmaceutical system is symptom-oriented.
 
Messages
157
I understand your frustration and disappointment, and there is much we need. However the remit of NICE is very specific and limited and it just doesn’t include some of the things you want to see.

For example, t’s not the job of NICE to produce proposals for education, and the committee do not have the authority, resources or expertise to do so - that is the job of medical and healthcare educators.

(edit - to remove text better posted in another thread when/if I can.)

I'm not grateful to NICE for the new draft guidelines, it has been a major part of the problem facing the ME community for the last decade and more. We should remind people that NICE has authorized treatments that are inappropriate and harmful, never mind its complete failure to push the biomedical research agenda. Many us have paid a heavy price in terms of significantly worse health as a direct result of the treatments sanctioned by NICE so no I won't stop feeling angry at this ultra conservative institution that will not own up to its mistakes and failures.

I spoke to my GP today and he said that he didn't see anything in the new guidelines that will make a significant change to people's lives. He asked me: will a personalized care plan make any difference to you? I had to say no it wouldn't make any difference.

Of course, more research is needed but the lack of progress on this front is down to the refusal of the medical establishment of which NICE is a part to acknowledge that ME is a physical disease.

History proves time and again that major change only comes about because of movements from below that force establishment elites to make concessions/reforms that improve the lives of ordinary people.
 
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