New York State: Department of Health info page

John Mac

John Mac

Senior Member (Voting Rights)
This page is listed as being updated April 2018. Not sure what has been changed but there are some good points in it.

What is known is that ME is not a psychiatric disorder and it is not caused by a lack of exercise, contrary to common belief.

Although cognitive behavior therapy (CBT) and graded exercise therapy (GET) were once recommended to treat patients with ME, these interventions assume that patients are just out of shape (deconditioned) and are based on studies that included patients with other fatiguing conditions. These recommendations have caused more harm than good for people with ME and have been eliminated from the Centers for Disease Control and Prevention (CDC) website.
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https://www.health.ny.gov/diseases/conditions/me-cfs/
 
I think in about May 2017 the Commissioner in charge of NY State primary care physicians sent a letter to all PCPs removing CBT and GET as treatments for ME/cfs. I gave my own GP here in UK a copy. It was in a letter dealing with another subject, a child health issue.

https://www.meaction.net/2017/05/29...issioner-sends-letter-to-physicians-about-me/

ED: sorry, don't tweet
ED2: there is a link to the letter in the MEAction statement. Am not sure that removing CBT and GET is totally accurate but it states the harms associated with GET. The statement just posted seems clearer.
 
Webdog said:
Sent the relevant GET/CBT info to Healthwise. They acknowledged and say it will be forwarded to their ME/CFS content experts.

Healthwise previously agreed to remove their GET/CBT content, but they are still undecided about harms.
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Hi Webdog - do you know if they have looked at what AHRQ had to say about evidence of harms?
 
Esther12 said:
Don't we want to keep good things away from him?! He's unlikely to make them better.
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Its hard to say, on one hand he will probably find out the tide is turning sooner or later, on another this will force his hand which could turn out good for us or work against us, hard to be sure which.
 
We don't want people like MS exerting pressure on others to change their materials. It's happened before. Remember the pretty good BMJ monograph on ME that overnight became a butchered thing of contradictory ideas because someone from PACE had reviewed it?

PACE authors also previously did lecture circuits around the world to convince others of their model before PACE was even published. This is why the BPS model is so popular in many of the places they visited. I feel like sharing it with him only gives him the opportunity to press them to change their minds. And sadly, people defer to power more than knowledge.
 
the internet archive had no current or previous version, so i told it to save it. [i had wanted to diff today's version. perhaps we will be able to diff it in the future now. but of course we should all be saving both good and bad webpages offline also whenever possible.]

thank you to all of the people who caused this. i presume this was done behind the scenes, possibly over a long period.
 
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