Articles on NICE guidelines 'pause'

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"Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

"There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

"Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.

"We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication.""

Basically seems like trying to blow up the process unless they are allowed these concessions.

Also, who are "our experts" referred to by Goddard here? Are we allowed to know?
 
Surely the time for re-considering evidence was before the guidelines were sent out for final typo reviews?

My understanding is that it was long before that, and that after that point it was, apart from in the case of grievous error, or typos, locked/final - according to the NICE rules that everyone involved has been aware of since the process started.

i.e. the time for re-considering, is long past, and by virtue of that, not now, or in the future, but in the past.

But possibly I have misunderstood the 'rules'.
 
Kitty said:
Good-o! Let's see it then, Andrew.
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He is referring to the outcomes recorded by clinics. As members here are well aware, thanks to @Jonathan Edwards, the unreliability of these measures are why robust clinical trials are required.

Hearing these sort of statements from what should be an independent senior physician does not help inspire me to put my trust in the medical profession, even as a lowly patient.
 
Wonko said:
Surely the time for re-considering evidence was before the guidelines were sent out for final typo reviews?

My understanding is that it was long before that, and that after that point it was, apart from in the case of grievous error, or typos, locked/final - according to the NICE rules that everyone involved has been aware of since the process started.

i.e. the time for re-considering, is long past, and by virtue of that, not now, or in the future, but in the past.

But possibly I have misunderstood the 'rules'.
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You are unfortunately living in an alternate universe, one bound by the laws of physics and time...
 
Ariel said:
"There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

"Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.
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This is exactly the position that both UpToDate and Healthwise used to take. That GET is beneficial for a subset of ME/CFS patients, and despite the risks, they didn't want to take away the option for doctors to prescribe GET when deemed appropriate.
 
Ariel said:
"Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

"There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

"Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.

"We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication.""

Basically seems like trying to blow up the process unless they are allowed these concessions.

Also, who are "our experts" referred to by Goddard here? Are we allowed to know?
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Nice of so many people to go on record in the past year, I'll say that.
 
Could someone remind me how long this NICE review and development of new guidelines has been going on? Two years?

Even if at a long shot if GET/CBT helped some with ME, which I'm very doubtful they do, all pwME should not be put through this non-evidence based treatment.

As well, due to the vague, watered-down overly inclusive case definitions, study subjects could very have not been suffering from ME at all.
 
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Dr Alastair Miller, a consultant physician in infectious disease and internal medicine and a former principal medical adviser for Action for ME, warned that “without CBT and GET, there is nothing” and added: “It is difficult to say where we go from here.”
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I'm sure there was a time when doctors said, "Without bloodletting, we have nothing."

Is the concept of "worse than nothing" really so hard to understand?
 
Suffolkres said:
4 years...... in 2017 they changed their mind about a refusal to review....
Legally that refusal was indefensible we suggested.
It would have rendered 2007 non compliant wirh new legislation as well.
Legal pressure will be required now.
It looks like it might materialise!
Doctors with ME Rapid Response and comment
https://doctorswith.me/rapid-respon...line-delay-and-accommodation-of-unlawfulness/
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Thank you @Suffolkres

4 years! Good grief! This time frame makes the timing of this last minute pause is unacceptable. I would like to say much more but will settle for expletive, expletive, expletive!

Thank you so much to Doctors with ME!
 
Something I have flagged up to ForwardME and maybe something to Tweet:

Defenders of CBT and GET claim that healthcare workers know these work for some patients. But the PACE results indicate that if there is any real effect it would be too small to distinguish from natural recovery in routine practice.
 
My suspicion is that certain rehab experts are confusing "chronic fatigue" with "chronic fatigue syndrome". They think they know how to treat ME/CFS but they're actually treating people who after surgery, injuries and similar have chronic fatigue and a slow recovery.

They probably don't even know what PEM is.
 
The lack of acknowledgment from the royal colleges that a small number of researchers have been leading patients and clinicians up the garden path with evidence of such low quality for decades is very clear.

It’s disappointing but it’s much better to openly know where everyone stands, and what exactly it is they are standing on.
 
Kalliope said:
BBC Outrage at chronic fatigue syndrome advice update pause

quote:
Andrew Goddard, president of the Royal College of Physicians, said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients.

"There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

"Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.

"We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication."
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Art Vandelay said:
Goddard is advocating for a treatment which NICE has concluded does not help and only harms patients. What's worse is that he is doing so on the basis on anecdotal evidence only.

Perhaps a complaint about him to your medical practitioner regulator is in order?
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It's still not clear to me if Goddard speaks for the Royal College of Physicians or if this "We" just refers to those who issued the response from the College as a stakeholder?

Also, how is their involvement as a stakeholder discussed within the college? Did it need to be agreed by their governance? Was there a members' vote on their comment on the draft?

Edited to add: The Times article published before the news about the pause quoted a "spokeswoman" of the Royal College of Physicians
 
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