UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Okay - so now the state of irkedness over the 'pause' is being replaced by a state of irkedness over the choice of pictures, and words, in the media.

If a 200 mile wide crater appears in the mid UK then it may be a sign that......my irritation has caused me to explode, a little.

(pictures of the sort above, coupled with a pretty much universal 'victory for campaigners' line cannot be coincidental, and more likely to be part of an orchestrated smear/minimising campaign, by someone, who has access to/'control' over all the media outlets - who will not accept the new GL).
 
I wonder who authored those dastardly and scientifically illiterate remarks from the Association of British Neurologists. The emphasis on not all symptoms being psychiatric clearly connote they believe most symptoms are due to psychogenic causes.

Moreover, I recall their commentary conceding that GET/CBT may not be curative, but instead should be deemed a pathway to “recovery.” Seems a distinction with no palpable difference.

The entire haranguing of the updated guidance is reminiscent of pablum written by Al Carson and spoon fed to the always petulant Mike Sharpe.
 
Sean said:
Frozen ones work better.

Just saying. :whistle:
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Now why did I not think of that
Dx Revision Watch said:
On the Guidance Overview page:

https://www.nice.org.uk/guidance/NG206

what is the significance of the Royal College of Physicians logo at the bottom of the page, above the "NICE accredited" logo?

I've had a look at some other recently published guidelines and some just have the "NICE accredited" logo at the foot of the page, or the NHS logo. This one also has the RCP logo:

https://www.nice.org.uk/guidance/ng196
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Is it those that financed the guidelines?
 
Sly Saint said:
Manchester man with ME’s relief as ‘harmful’ therapy ditched from treatment list
"
A Manchester man who has ME has spoken about being involved in the long campaign to get a harmful exercise therapy removed from the list of treatment operations for patients.

Adam Lowe, from Salford, was involved in workshops which brought together patients, scientists and medical experts to discuss the effect of using graded exercise therapy.

Now the guidelines at the National Institute for Health and Care Excellence (NICE) have been updated to remove graded exercise therapy from the treatments to be offered to people with myalgic encephalomyelitis.

The move marks a successful end to more than 10 years of campaigning by patients, charities and organisations."

https://www.manchesterworld.uk/news...-people-with-chronic-fatigue-syndrome-3437198
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Bloody hell. That was quick.

ETA: He got the story up less than two hours after talking to me.
 
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Wonko said:
Okay - so now the state of irkedness over the 'pause' is being replaced by a state of irkedness over the choice of pictures, and words, in the media.

If a 200 mile wide crater appears in the mid UK then it may be a sign that......my irritation has caused me to explode, a little.

(pictures of the sort above, coupled with a pretty much universal 'victory for campaigners' line cannot be coincidental, and more likely to be part of an orchestrated smear/minimising campaign, by someone, who has access to/'control' over all the media outlets - who will not accept the new GL).
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Not saying it's ideal - it's not; but using stock photos is quick and cheap for the media. Press releases went out yesterday. Not a lot of time to organise photos of actual patients. Perhaps the orgs could maintain a stock of copyright free images to make available to the press.
 
Dx Revision Watch said:
Not saying it's ideal - it's not; but using stock photos is quick and cheap for the media. Press releases went out yesterday. Not a lot of time to organise photos of actual patients.
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Yep - decades is not a lot of time.

Fair enough they may not have bothered, in all these years, to get any pictures of pwME, but to use a picture of someone jogging up stairs.......that is deliberate contempt (IMO).
 
Sly Saint said:
Manchester man with ME’s relief as ‘harmful’ therapy ditched from treatment list
"
A Manchester man who has ME has spoken about being involved in the long campaign to get a harmful exercise therapy removed from the list of treatment operations for patients.

Adam Lowe, from Salford, was involved in workshops which brought together patients, scientists and medical experts to discuss the effect of using graded exercise therapy.

Now the guidelines at the National Institute for Health and Care Excellence (NICE) have been updated to remove graded exercise therapy from the treatments to be offered to people with myalgic encephalomyelitis.

The move marks a successful end to more than 10 years of campaigning by patients, charities and organisations."

https://www.manchesterworld.uk/news...-people-with-chronic-fatigue-syndrome-3437198
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Great article @adambeyoncelowe.
 
Wonko said:
Yep - decades is not a lot of time.

Fair enough they may not have bothered, in all these years, to get any pictures of pwME, but to use a picture of someone jogging up stairs.......that is deliberate contempt (IMO).
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As I've added to my comment: Perhaps the orgs could maintain a stock of copyright free images to make available to the press.

I wouldn't describe it as "deliberate contempt" rather a lack of imagination and time constraints. Different if it's a feature article. But as I say, press releases didn't go out until yesterday.
 
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Dx Revision Watch said:
Perhaps the orgs could maintain a stock of copyright free images to make available to the press.
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As I've said elsewhere, orgs (charities etc) need to work with the photo libraries to identify and correctly tag suitable images. Many media orgs will have subscriptions with preferred libraries, so it is difficult to get the press to use different sources without a lot of input and education.
 
Doctors told NOT to prescribe exercise to patients with chronic fatigue syndrome
Chronic fatigue syndrome sufferers will no longer be told to exercise to relieve their symptoms, under new NHS watchdog guidelines.
The National Institute for Health and Care Excellence (NICE) has today ruled against graded exercise therapy (GET) for patients.
The controversial treatment involves starting exercise, such as swimming or walking, which is gradually increased over time.
But many patients wanted it banned because it implied their condition was merely psychological rather than physical, and actually made their condition worse in some cases.
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https://todayuknews.com/health/doct...se-to-patients-with-chronic-fatigue-syndrome/

(Seems to be cobbled together from various sources AfME, Strain, PW TC and A Miller also quoted)
 
Dx Revision Watch said:
I wouldn't describe it as "deliberate contempt" rather a lack of imagination and time constraints.
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If you search Shutterstock and Adobe stock for images using terms like "illness" or "chronic illness", you do get a few bland results among the top hits. Many more of them have a medical context, though; you actually have to make an effort to find photos showing healthy, well-dressed people acting tired. In an exercise that took less than five minutes, I saw several that would have been more appropriate – the images are there, and it's easy to find them.

On the other hand, if you search for "fatigue"...

It shows how much work we still have to do to convince people we are actually ill. It starts with the simple act of using appropriate search terms.
 
Kitty said:
If you search Shutterstock and Adobe stock for images using terms like "illness" or "chronic illness", you do get a few bland results among the top hits. Many more of them have a medical context, though; you actually have to make an effort to find photos showing healthy, well-dressed people acting tired. In an exercise that took less than five minutes, I saw several that would have been more appropriate – the images are there, and it's easy to find them.

On the other hand, if you search for "fatigue"...

It shows how much work we still have to do to convince people we are actually ill. It starts with the simple act of using appropriate search terms.
Click to expand...

see post here
https://www.s4me.info/threads/getti...anyone-know-a-photo-editor.23034/#post-386328
 
Kitty said:
If you search Shutterstock and Adobe stock for images using terms like "illness" or "chronic illness", you do get a few bland results among the top hits. Many more of them have a medical context, though; you actually have to make an effort to find photos showing healthy, well-dressed people acting tired. In an exercise that took less than five minutes, I saw several that would have been more appropriate – the images are there, and it's easy to find them.

On the other hand, if you search for "fatigue"...

It shows how much work we still have to do to convince people we are actually ill. It starts with the simple act of using appropriate search terms.
Click to expand...

FATIGUE
 
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