The TImes, Sean O'Neill: Disputed therapies for myalgic encephalomyelitis abandoned

Countrygirl

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The push-back has started!

We have progressed from NICE vs patients 2007

to

NICE vs the medical profession 2021

According to the article, the medical profession are considering rejecting the new guidelines as they are ignoring the needs of patients ( a typo perhaps? :whistle: ....don't they mean their own needs?) Is there a precedent for the medical authorities taking such a stand? Sir Simon Wessely is riding to their rescue ........although by proxy........his wife has just been appointed President of the Royal Colleges of GPs.

Today, Sean O'Neill writes in The TImes:

Disputed therapies for myalgic encephalomyelitis abandoned

https://www.thetimes.co.uk/article/...myalgic-encephalomyelitis-abandoned-r268lkv7x


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BrightCandle

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New guidelines are out tomorrow, fully expecting given everything that it has at least dropped GET and CBT for treatment. I got one of the 100 slots for the Q&A next tuesday too, I feel like this is a big moment for those in the UK and those countries that follow the UK's guidance or relied on the PACE trials for their own treatment recommendations.

We shall see the extent of it tomorrow anyway, here is hoping it goes further than the draft.
 

Countrygirl

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There is great entertainment on Twitter where Prof Brain Hughes is publicly humiliating Sharpe. He is pretending not to know who he is when referring to MS's comment under The TImes article which says:


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Prof Hughes addressing Sharpe's comment:


Brian Hughes
@b_m_hughes
·
1h
What an ill-educated, badly reasoned & frankly dumb comment this is, posted under story by
@TimesONeill
on new treatment standard for ME (myalgic encephalomyelitis)/CFS (chronic fatigue syndrome).

NICE are de-listing CBT & GET (graded exercise) as #MECFS therapies
#pwME The author of the comment, MichaelS (who he?), makes many ranty points, touching on a several demeaning anti-disability tropes.

Internet comments that stigmatize disability groups are nothing new, unfortunately. But this comment is special. The commenter says, "how does he expect to measure success of such therapies, if not by patient reporting? There is no other measure of the impact of this condition!"

To which I say, "Are you kidding me?!" It is a long-term & debilitating illness, affecting c. 1% of the population. You will recognise the symptoms, similar to what we see in Long Covid: post-exertional malaise, muscle weakness, orthostatic intolerance, pain, ataxia, etc.Such symptoms are objectively measurable. They are severe, life-changing, & damaging to relationships, education & careers. Many persons with #MECFS are in permanent #lockdown, unable to leave their home, or even their bedrooms, for decades. All measurable.And contrary to what MichaelS states, many "objective measures of the impact of this condition" HAVE been studied in research.

And the research shows that the old treatments NICE are now rejecting for #MECFS - which MichaelS defends - simply don't work. Objective measure 1: Physical movement & exercise tests

Commonly used. Patients do step tasks, lift tasks, etc, as per any physical fitness assessment. To date, studies have found no detectable benefit in physical performance post-CBT/GET in persons with #MECFSObjective measure 2: Actometer data

Actometers are small fitted devices that record physical movements, akin to step-counters. Patients treated with CBT/GET, despite reporting "feeling better", show no improvement in actometer mobility Objective measure 3: Walking ability

Also common. A frequent standard is the self-explanatory "6-minute walk test". Patients treated with CBT/GET show NO IMPROVEMENT in walk test score, compared to untreated patients. In fact, in one major study, the walking ability of patients with #MECFS treated using CBT/GET ended up SO POOR that they actually met the criteria for a lung transplant. Objective measure 4: School/work attendance post-treatment

Objectively tracked school attendance does not improve following CBT/GET treatment.

None of the patients alleged to have been cured in the #PACEtrial ever returned to work. Objective measure 5: Disability status as per disability payments

Analyses of persons treated using old standard showed their disability payments INCREASED afterwards, even for those that the CBT/GET therapists claimed had "recovered". The main problem for CBT/GET therapists is that objective measures always reveal their treatments to be useless as treatments for #MECFS.

Most likely, this is PRECISELY why they like to pretend that objective measures are "impossible"! Instead they prefer patient self-reports, but only *after* using CBT to encourage patients to *focus on positives*.

CBT actively aims to change a patient's frame of reference re own health.

Thus, *self-reported* health "changes"...but *actual* health does not!, It's a shame people like MichaelS feel so entitled as to comment on news stories despite having such poor knowledge. :rofl::rofl::rofl::D

I suggest they start by READING THE LITERATURE on #MECFS & not allowing themselves to be brainwashed by scientifically illiterate physician activists...:rofl::rofl::rofl:




In short, there are MANY objective measures of treatment impact in #MECFS. The "scientific community" know this quite well.

NICE are correct to reject the old treatment standard.

Finally, here's a primer I wrote that might be helpful. The new NICE Guideline for ME/CFS: Ten Questions Answered
 

Abrin

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Can't help but wonder what type of journalist would say that that three committee members resigned and not do the slightest amount of digging into who those committee members were and if the medical connections they currently had, had anything to do with the fact that resigned. I mean, if three committee members resigning is 'unprecedented', wouldn't you even find it the slightest bit interested who those committee members were and what was causing them to resign?
 

Countrygirl

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Can't help but wonder what type of journalist would say that that three committee members resigned and not do the slightest amount of digging into who those committee members were and if the medical connections they currently had, had anything to do with the fact that resigned. I mean, if three committee members resigning is 'unprecedented', wouldn't you even find it the slightest bit interested who those committee members were and what was causing them to resign?
The journalist knows a great deal about ME and the political situation from, sadly, personal experience. He is hamstrung by the editor.
 
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9. Why do some clinicians persist in defending the old treatments based on CBT/GET?

Processes such as NICE reviews are needed because clinical judgment on its own is insufficient for drawing consistent conclusions about treatment options. Clinicians are human beings, whether they be service leaders, senior academics, or eminent professors. They are subject to human fallibilities. These fallibilities include the problem of being naturally wary of anything that upsets the status quo, especially where one’s own professional reputation is threatened.

Understandably, many clinicians have based their practice on the previous NICE guideline. They have invested time and effort developing services around the provision of CBT and GET to ME/CFS patients. Overhauling these services in light of the new NICE guideline will be especially challenging for these clinicians, for both psychological and logistical reasons.
Hopefully, they will begin to consider what we've been through.
 

Countrygirl

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NICE are NOT going to publish the guidelines tomorrow. (!!)

https://www.nice.org.uk/news/articl...ideline-on-diagnosis-and-management-of-me-cfs

NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
17 August 2021
The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.
Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.
NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.
We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.
In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.
 

Abrin

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"In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved."

Wow, just wow.
 

BrightCandle

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I have a slot for questions to the board next week on Tuesday. At this point I am wondering what the hell to ask (will they even run it after this embarassing display again?!) since they have commited ME patients to yet another pause that results in them receiving treatment they know hurts them. Honestly the only way NICE can progress is to completely defund all the CFS clinics, they are the problem.
 

Countrygirl

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I have a slot for questions to the board next week on Tuesday. At this point I am wondering what the hell to ask (will they even run it after this embarassing display again?!) since they have commited ME patients to yet another pause that results in them receiving treatment they know hurts them. Honestly the only way NICE can progress is to completely defund all the CFS clinics, they are the problem.
Will this still go ahead now?