New York State: Department of Health info page

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

https://www.health.ny.gov/diseases/conditions/me-cfs/

 

Can someone tweet this kind of thing?
I am crap at at Twitter, but wider awareness of this kind of statement can only be a good thing.

 

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.

 

Thanks for letting us know, @John Mac. There are too few authoritative sources pointing out the harms from GET.

 

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.

 

https://twitter.com/user/status/986012441665589248

 

I had some energy today, so I also sent this info to the California Department of Public Health, asking them to make a similar public statement about GET/CBT for ME/CFS.

Feel free to do the same in your state. Make some noise. Show some unrest.

 

Hi Webdog - do you know if they have looked at what AHRQ had to say about evidence of harms?

 

I don't know. I haven't specifically sent that information to Healthwise, other than to say that AHRQ no longer recommends GET/CBT in clinical practice.

 

This is something that Terri Wilder (#MEAction) has been working on :
https://www.s4me.info/posts/41666/

eta: Mt Sinai and Mayo clinic are also on her 'list'; the thread I set up on 'dodgy' Medical Courses was partly as something that might be useful in the future along the same lines.

 

Have you considered sending them the Geraghty study of reported harms?

 

This is a well written piece that addresses history instead of ignoring it.
It gets the Alvin seal of approval (if i ever get around to creating one)

 

Can someone tweet it to MS.

 

That is seriously good to see.

 

I feel like printing it off and framing it I feel befuddled and discombobulated but in a good way.
My brain doesn’t know how to respond to reading accurate information for a change

 

Don't we want to keep good things away from him?! He's unlikely to make them better.

 

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.

 

Don't draw MS on us....leave him be!

 

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.