NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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InitialConditions said:
Does anyone know if NICE are able to post out paper copies of the Guidelines? I do not have access to a printer, and staring at a laptop screen for hours on end is not an option for me.
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I've opened it in acrobat reader and it will read it aloud - On the view menu there is a read aloud option and if you click on some text it will read it to you.
 
MeSci said:
I was in hospital a few years ago where the noise was so bad I literally felt like jumping out of the window (and it was probably high enough to be fatal if I had been able to). It consisted of various alarms, some going off completely unnecessarily, and I was not the only person to be disturbed by it, as there was a group of older ladies notifying the staff about it. It was horrendous. I was in isolation!
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Yes, I’ve had a similar issue even when I was in a separate side room. It was awful. In my case though, no one else even seemed to think it was an issue, when I was there.
 
MeSci said:
I was in hospital a few years ago where the noise was so bad I literally felt like jumping out of the window (and it was probably high enough to be fatal if I had been able to). It consisted of various alarms, some going off completely unnecessarily, and I was not the only person to be disturbed by it, as there was a group of older ladies notifying the staff about it. It was horrendous. I was in isolation!
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Sorry, think my point should have been clearer. The reason why I said “normal environmental levels” is that even in situations when noise levels are not “high” or irritating to others, ie just normal conversation in a normally busy corridor, with me in enough proximity to the conversation, is enough to cause deterioration. As JemPD says, it’s hard for others to understand that these apparently “not noisy” situations can be extremely difficult as well, let alone actual (for others) noisy situations.
 
Phil Parker tweeted 6 hours ago:

"nice guidelines change removing GET. It always seemed quite a blunt instrument to me..."

Then posts a link to the Guardian article, completely failing to mention to his readers that NICE also specifically said lighting process not recommended!



I looked at Wessely, Gerada and Sharpe twitter pages and none of them mention the draft guidelines at all.
 
Sarah94 said:
My main worries are:

(a) BPS people trying to get it changed by arguing that GET is "evidence-based".

(b) the BPS people will try to take control of the narrative by claiming that NICE has bowed to pressure from patients, rather than listening to the science. Unfortunately, a sizeable amount of the general public will likely accept that narrative, because (1) it's what they've been being told for decades and (2) it fits with other (false) popular narratives where privileged people complain that marginalised groups are oppressing them. And, how many doctors will listen to the BPS people and believe that NICE is being wishy washy and bowing to pressure from militant patients? I certainly know one doctor who will see it that way.
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Both laughable. The committee was stacked with BPS cheerleaders who would have rubber-stamped any evidence if they could have gotten away with it. That they could not do so in that process, with all the advantages, says a lot about how mediocre it is.

Same for b), frankly, the committee was stacked, experts were literally excluded from the process because they agreed with the patients, as if this is a conflict of some kind, just not the other way around. All the odds were against even reading the evidence. Let's not forget that this was the starting point in 2017: no need to even review anything. That's how ideologically stacked in favor of BPS this all was.

They will make those claims but they will look ridiculous.
 
Sly Saint said:
PW:
“It is also remarkable that the committee use the symptom of post-exertional fatigue as a reason for not providing GET"

surely they (NICE) used PEM ie post exertional malaise not fatigue?



again nervous about the use of 'cause'; echos of the BACME statement.

Does this also extend to the CBT that 'encourages' patients to incrementally increase activity?
'pacing-up'?

eta:
from DTs blog

hopefully the penny will finally drop for journalists.
Time to retract the PACE trial.
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The replies from the BPS gang are for the most part incoherent, barely relevant to what they are commenting on. Meandering and very dishonest, the SMC made no pretense of being a for-hire PR firm here.

But Peter White's comments cover him in ridicule. In the 2007 guidelines, he expressed total disbelief about the fact that GI symptoms are relevant to ME. Now here he literally misuses the term PEM, which he clearly does not understand, and somehow argues that PACE evaluated PEM, even though they literally do not understand what it means at all, confusing PEM with fatigue and arguing, post hoc without ever mentioning it, that this is what PACE was about, even though it clearly wasn't because these people have never used the term, never recognized it exists, have never understood a damn thing about it.

Some "expert". White should remain retired. Incoherent ideas sound even worse when they are incoherently expressed, well, even more so than usual anyway.
 
Sly Saint said:
Fatigue:


p50
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-4
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This is a good compromise. It's very hard to name things right here but fatigability is much more relevant than fatigue. And malaise never really worked well here, it's very much part of the illness but PEM isn't just malaise, it increases it and nearly everything else.

Small steps forward given how difficult it remains to apply in practice, but they do count, especially with the removal of the infinite steps backwards. This was difficult work and it came out... pertinent. Incredible given how the odds were stacked.
 
John Mac said:
Treatment Guidance for ME Proposes Curbs on Graded Exercise Therapy

A login required to read the whole article



https://www.medscape.com/viewarticle/940671
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The framing isn't wholly fair, it's not that it can't be offered anymore, it's that it is not considered a valid treatment anymore, thus removing the very option of offering it, because why would anyone offer treatment that is useless? It's as much of a loss as "losing" a tumor could be considered a "loss".

But this is surprisingly fair and, shall I say, accurate. Accuracy is underrated. I like accuracy, I would very much to have more of it in the future, hell, even in the present.
Paul Chrisp, director of the Centre for Guidelines at NICE, said: "ME/CFS can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging, and accepting the condition and its impact.
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Just skimming:
• not to use more energy than they perceive they have − they should plan their daily activity to stay within their energy envelope and not push through activity
• to rest as they need to
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Yes. Stay within energy envelope and to not push through activity - good. Rest as need be - good.
Be aware there is no current treatment or cure (non-pharmacological or 5 pharmacological) for ME/CFS.
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Good.
Discuss with people with ME/CFS the principles of energy management, its role in supporting them to live with their symptoms, the potential benefits and risks and what they should expect. Explain that it:
• is not curative
• is a self-management strategy led by the person themselves but with support from a healthcare professional
• can be applied to any type of activity
• helps people understand their energy envelope so they can reduce the risk of overexertion worsening their symptoms
• recognises that each person has a different and fluctuating energy limit, and they are the best judge of their own limits
• can include help from a healthcare professional to recognise when they are approaching their limit (children and young people in particular may find it harder to judge their limits and can overreach them)
• uses a flexible, tailored approach so that activity is never automatically increased but is progressed during periods when symptoms are improved and allows for the need to pull back when symptoms are worse
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Good overall, albeit possibly some fine tuning. I like the last point especially, because it highlights never to opt for automatic increases in activity, and that may have to drop back. Much more in the vein of pacing. Helping people to understand their energy envelope, if done sincerely and competently, is good.
is a long-term approach − it can take weeks, months or sometimes 2 even years to reach stabilisation or to increase tolerance or activity
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Wary of this bit. Presumes things will eventually stabilise or improve. Not sure of evidence for that, though many may stabilise not all necessarily will.

Not looked in any more detail yet, but seems promising.
 
One notable thing here is how it cements the fact that the BPS ideologues are entirely self-serving and do not consider patient input or outcomes to be of any relevance to their work. This process was the end-result of years of arduous patient involvement and efforts, relied in part on years of patient reports of harm, or at best uselessness, and also conducted a large community survey, for all practical matters equal in terms of evidentiary value to any part of the body of evidence for the BPS model, as it is entirely based on questionnaires (with fewer respondents). It is also received with praise and enthusiasm by the patient community, for its accuracy and respect for basic facts.

And they are angry. Angry that patients were listened to, even if in a highly biased process that nevertheless managed to work this time around. Angry that patient outcomes have to be considered important. Angry at the suggestion that we should be treated like people, capable of agency and reliable witnesses to our own life experience.

They are in fact very much trashing patient reports and input here, promoting instead their own biased opinion, literally eminence-based medicine, arguing that in their capacity as "experts", their opinion is more valuable than any piece of evidence, far above patient reports and outcomes.

All while they pretend, even claim, that it is they who are listening to the patients. As they are literally trashing the entire patient community. These people are nothing but self-serving ideologues. They represent everything that is wrong with medicine. Nothing makes that point clearer than being irrationally angry at a good outcome for patients, because it is bad for them, for their career, for their little self-serving egos.

What an incredible failure.
 
JemPD said:
What AfME quotes? Do you mean the ones from Miller?
My bolding.
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Clare Ogden, head of communications and engagement at UK charity Action for ME, said that Nice’s previous guidelines had been produced with “what Nice believed was the best available evidence at the time but it’s become abundantly clear from patients that their experiences differed from that”.

Nice last issued recommendations on chronic fatigue syndrome in 2007. The new draft guidelines state that it is a complex condition with no one treatment suitable for everyone, “particularly where there is the potential for an intervention to benefit some people but cause harm in others”.

Even with support from a specialist, only about one in 10 patients reported that exercise therapy helped manage symptoms, while nearly half reported a worsening effect, according to a 4,000-patient survey conducted by Action for ME last year.
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conveniently omitting the other earlier patient surveys that showed the same.
 
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