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.

 

Now why did I not think of that

Is it those that financed the guidelines?

 

Bloody hell. That was quick.

ETA: He got the story up less than two hours after talking to me.

 

That picture….

 

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.

 

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).

 

Great article @adambeyoncelowe.

 

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.

 

I daresay that patients with MS or Parkinson's and many other conditions get similarly pissed off with the media's choice of stock images.

 

There's a little confusion in the timeline (i.e., workshop, roundtable, committee, etc). But overall, I'm pleased with it.

ETA: He's fixed the wording. It's now clear that the workshop was in 2017, the committees began in 2018, and the roundtable was this year.

 

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

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)

 

A Register of Interests document has been published on the Guideline History page since this morning:

https://www.nice.org.uk/guidance/ng206/history

Register of interests PDF 1.12 MB 29 October 2021

 

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.

 

Thread here:

https://www.s4me.info/threads/getti...anyone-know-a-photo-editor.23034/#post-386298

 

Can confirm. I'm only looking at a couple of earliest years and I feel like I already have enough to write a thick (and juicy) book.

 

see post here
https://www.s4me.info/threads/getti...anyone-know-a-photo-editor.23034/#post-386328

 

FATIGUE

 

GP Online:
Reworked NICE advice on ME/CFS warns against 'one-size-fits-all' approach
By Nick Bostock, 29 October 2021

https://www.gponline.com/reworked-n...st-one-size-fits-all-approach/article/1731825