Sly Saint
Senior Member (Voting Rights)
was the chair but not anymore
https://www.s4me.info/threads/bacme...led-to-11th-may-2021.13349/page-4#post-345838
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
NICE ME/CFS draft guideline - publication dates and delays 2020
- Thread starter rogerblack
- Start date
https://www.s4me.info/threads/bacme...led-to-11th-may-2021.13349/page-4#post-345838
cassava7
Senior Member (Voting Rights)
Thank you, I have corrected my post.
Sly Saint
Senior Member (Voting Rights)
FOLLOW-UP to previous post on responses to the draft NICE guideline for “ME/CFS” + the need for a communications strategy rethink
July 1, 2021
https://valerieeliotsmith.com/2021/...e-need-for-a-communications-strategy-rethink/
July 1, 2021
https://valerieeliotsmith.com/2021/...e-need-for-a-communications-strategy-rethink/
Last edited by a moderator:
Sly Saint
Senior Member (Voting Rights)
The 25% ME Group had also sent an enquiry to cfsme@nice.org.uk, then to cfs@nice.org.uk. I learned yesterday that this message was received back: "Since we started the development of the guideline, we have only ever had one email address which is cfs@nice.org.uk<mailto:cfs@nice.org.uk> therefore we have not received your previous email."
"we have only ever had one e-mail address" is patently incorrect. The scope consultation form was to be returned to cfsme@nice.org.uk (still available at NICE website here: https://www.nice.org.uk/guidance/gid-ng10091/documents/html-content-3) Same with the invite to scoping workshop.
Barry
Senior Member (Voting Rights)
It would seem it needs a reply to cfs@nice.org.uk stating the above.
If they have clearly published an email address that they deny publishing, and have not been monitoring that address - how much pertinent, maybe crucial, information has been lost to the guideline process! This is essential to follow up! There could be all manner of information dropped into a black hole, especially as they seem to suggest it has not been seen at their end.
Capturing the evidence here just in case somebody decides to change the website info re email address:
...
InitialConditions
Senior Member (Voting Rights)
Charles has been stood down from the Guideline Committee, owing to 'conflicts of interest' and in particular a complaint made about a social media post he made.
https://meassociation.org.uk/2021/0...JocYeFIjVpCjY9eHOFzYAahTEqV6k1WmZYnwTT80mV5-E
Mod note: Go to this thread for further discussion of this:
https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-40#post-359943
https://meassociation.org.uk/2021/0...JocYeFIjVpCjY9eHOFzYAahTEqV6k1WmZYnwTT80mV5-E
Mod note: Go to this thread for further discussion of this:
https://www.s4me.info/threads/nice-...-10th-november-2020.17687/page-40#post-359943
Last edited by a moderator:
Suffolkres
Senior Member (Voting Rights)
Moved posts
https://www.huffingtonpost.co.uk/en...over-me-treatment_uk_611cccd7e4b0c696810328fd
@FaimaBakar
Faima, I see you're a freelance journalist who has written on the issue of the NICE Guidelines. I respectfully suggest you check against the facts of the matter & reject the fiction you have been mis -advised on I am a NICE Stakeholder so can speak with some authority
https://www.huffingtonpost.co.uk/en...over-me-treatment_uk_611cccd7e4b0c696810328fd
@FaimaBakar
Faima, I see you're a freelance journalist who has written on the issue of the NICE Guidelines. I respectfully suggest you check against the facts of the matter & reject the fiction you have been mis -advised on I am a NICE Stakeholder so can speak with some authority
Last edited by a moderator:
Invisible Woman
Senior Member (Voting Rights)
"For years, patients and charities have been calling on healthcare professionals to recognise ME as a medical illness rather than a psychological problem and the National Institute for Health and Care Excellence (NICE) was due to publish long-awaited landmark guidance."
No.
We object to the assumption that the condition is primarily psychological when there is absolutely no proof that is is.
We object to treatments based on unproven psychological hypothesis that harm many more people than they ever help.
We object to the squandering of funds on research that is so poorly designed it is meaningless.
We object to virtually all research funds over the past several decades being focussed pychological therapies to the exclusion of everything else.
"Insanity is doing the same thing over and over again and expecting a different result"
Yet this is precisely what many of the so-called ME experts have done for 30 years.
It is beyond time for.something completely different - like Decode ME perhaps.
Invisible Woman
Senior Member (Voting Rights)
That's me sunk!If anyone is up to it, at the bottom of The Huffington Post article, there is a "suggest a correction" button. But it is limited to 1000 words
Suffolkres
Senior Member (Voting Rights)
You can email them though!
Standards And Corrections
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HUFFPOST UK CORRECTIONS POLICY
HuffPost UK works to correct any misstatements in a timely manner, with a correction note appended to the bottom of an article to indicate what has been fixed and how. More prominent notices may be included for more egregious errors. We will only retract an article after extensive review by a senior editor has found fundamental flaws in the reporting, and always with an editor's note.
If you think you’ve spotted an error, we would be really grateful if you could let us know. On any HuffPost UK article page, you will find a link to “Suggest a correction”. Hit that link and you can alert us to the issue. We will endeavour to get back to you as quickly as possible. Alternatively email uk-corrections@huffpost.com
As follows;
Faima, I see you're a freelance journalist who has written on the issue of the NICE Guidelines. I respectfully suggest you check against the facts of the matter & reject the fiction you have been mis -advised on I am a NICE Stakeholder so can speak with some authority Corrections in Italics and emboldened.
'We are in the dark': Despair for ME patients as ‘doctors’ (only a small few with vested interest and blind to bias) can't agree on treatment
People with ME, otherwise known as chronic fatigue syndrome, are still waiting for doctors to agree on the best way to treat the condition.
(No majority of doctors AGREE with paused guideline!)
ME, which stands for myalgic encephalomyelitis, is a little understood condition
(incorrect, it is well understood but poorly served with unclear causality) characterised by extreme tiredness, muscle and join pain, brain fog and sleeping problems.
For years, patients and charities have been calling on healthcare professionals to recognise ME as a medical illness rather than a psychological problem and the National Institute for Health and Care Excellence (NICE) was due to publish long-awaited landmark guidance. However, due to a backlash from other medical groups, NICE has withdrawn (it’s guidance,
(NO IT HAS NOT! IT IS ‘PAUSED”) which included advising doctors to stop administering a controversial therapy.
The contested therapy - graded exercise therapy (GET) - includes increasing exercise bit by bit to build tolerance. But opposers say this treatment supposes those with ME have symptoms due to being inactive.
The new guidance would also have included advice saying CBT - a behavioural therapy often used for people with anxiety - is not a cure for ME, as reported by The Guardian, which saw the recommendations before it was withdrawn.
(NO IT HAS NOT! IT IS ‘PAUSED”- despite there being no mechanism within NICE to do this)
Patient groups (and many doctors , medical professionals and academics) agree with the NICE recommendations, saying these therapies have left some patients feeling worse than before. However, scientists and medical groups
(a few with vested interest and blind to bias) say otherwise, arguing that GET and CBT are the only evidence-based treatments for ME. Several ME charities including Forward ME, Action for ME, ME Association, Doctors for ME and ME Research UK said in a joint statement: 'Many medical professionals, researchers and patient representatives have spent three years diligently reviewing and assessing the evidence. The document has been approved by the committee and should be published. 'The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science. We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.'
Sonya Chowdhury, from Action for ME, added: 'We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practice. Nobody should be able to undermine that.'
However, Dr Alastair Miller, a consultant physician in infectious disease and internal medicine and a former principal medical adviser for Action for ME,
(discharged due to his views inconsistent with patient experiences determined by surveys) pointed out that 'without CBT and GET, there is nothing'.
He said: 'It is difficult to say where we go from here. The draft guidelines were predicted to stop the use of GET and limit the use of CBT, which have served most chronic fatigue syndrome/ME clinicians and patients well for many years and were endorsed by the Nice guidelines in 2007. Most NHS clinicians use GET and CBT and have done so for a long time. Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline. If the professional bodies that represent those who care for these individuals were not prepared to support the guideline,
(So has there been a consensus decision on this via the Academy of Royal Colleges and its membership? Or is it just a few individuals in only 2 of the 23 Colleges? ) this may have made Nice think again. It is difficult to say where we go from here.'
Standards And Corrections
STANDARDS
We endeavour to be accurate in our reporting, transparent and thorough in our sourcing, and fair and independent in our analysis. HuffPost UK strives to verify and corroborate information via multiple sources whenever possible. We grant anonymity to sources so they can provide information in the public interest without putting themselves at risk; HuffPost does not grant anonymity to sources so they can avoid accountability for their opinions. All reporters are trained to follow our internal editorial code.
HUFFPOST UK CORRECTIONS POLICY
HuffPost UK works to correct any misstatements in a timely manner, with a correction note appended to the bottom of an article to indicate what has been fixed and how. More prominent notices may be included for more egregious errors. We will only retract an article after extensive review by a senior editor has found fundamental flaws in the reporting, and always with an editor's note.
If you think you’ve spotted an error, we would be really grateful if you could let us know. On any HuffPost UK article page, you will find a link to “Suggest a correction”. Hit that link and you can alert us to the issue. We will endeavour to get back to you as quickly as possible. Alternatively email uk-corrections@huffpost.com
As follows;
Faima, I see you're a freelance journalist who has written on the issue of the NICE Guidelines. I respectfully suggest you check against the facts of the matter & reject the fiction you have been mis -advised on I am a NICE Stakeholder so can speak with some authority Corrections in Italics and emboldened.
'We are in the dark': Despair for ME patients as ‘doctors’ (only a small few with vested interest and blind to bias) can't agree on treatment
People with ME, otherwise known as chronic fatigue syndrome, are still waiting for doctors to agree on the best way to treat the condition.
(No majority of doctors AGREE with paused guideline!)
ME, which stands for myalgic encephalomyelitis, is a little understood condition
(incorrect, it is well understood but poorly served with unclear causality) characterised by extreme tiredness, muscle and join pain, brain fog and sleeping problems.
For years, patients and charities have been calling on healthcare professionals to recognise ME as a medical illness rather than a psychological problem and the National Institute for Health and Care Excellence (NICE) was due to publish long-awaited landmark guidance. However, due to a backlash from other medical groups, NICE has withdrawn (it’s guidance,
(NO IT HAS NOT! IT IS ‘PAUSED”) which included advising doctors to stop administering a controversial therapy.
The contested therapy - graded exercise therapy (GET) - includes increasing exercise bit by bit to build tolerance. But opposers say this treatment supposes those with ME have symptoms due to being inactive.
The new guidance would also have included advice saying CBT - a behavioural therapy often used for people with anxiety - is not a cure for ME, as reported by The Guardian, which saw the recommendations before it was withdrawn.
(NO IT HAS NOT! IT IS ‘PAUSED”- despite there being no mechanism within NICE to do this)
Patient groups (and many doctors , medical professionals and academics) agree with the NICE recommendations, saying these therapies have left some patients feeling worse than before. However, scientists and medical groups
(a few with vested interest and blind to bias) say otherwise, arguing that GET and CBT are the only evidence-based treatments for ME. Several ME charities including Forward ME, Action for ME, ME Association, Doctors for ME and ME Research UK said in a joint statement: 'Many medical professionals, researchers and patient representatives have spent three years diligently reviewing and assessing the evidence. The document has been approved by the committee and should be published. 'The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science. We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.'
Sonya Chowdhury, from Action for ME, added: 'We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practice. Nobody should be able to undermine that.'
However, Dr Alastair Miller, a consultant physician in infectious disease and internal medicine and a former principal medical adviser for Action for ME,
(discharged due to his views inconsistent with patient experiences determined by surveys) pointed out that 'without CBT and GET, there is nothing'.
He said: 'It is difficult to say where we go from here. The draft guidelines were predicted to stop the use of GET and limit the use of CBT, which have served most chronic fatigue syndrome/ME clinicians and patients well for many years and were endorsed by the Nice guidelines in 2007. Most NHS clinicians use GET and CBT and have done so for a long time. Importantly, without CBT and GET, there is nothing. No new therapies or approaches have emerged since 2007, so in practice one needs to question whether there was ever a requirement to have a new guideline. If the professional bodies that represent those who care for these individuals were not prepared to support the guideline,
(So has there been a consensus decision on this via the Academy of Royal Colleges and its membership? Or is it just a few individuals in only 2 of the 23 Colleges? ) this may have made Nice think again. It is difficult to say where we go from here.'
If anyone is up to it, at the bottom of The Huffington Post article, there is a "suggest a correction" button. But it is limited to 1000 words
It didn't work for me. I had a couple of goes but the send button didn't work