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NY Health Commissioner sent letter to every physician in the state about myalgic encephalomyelitis

Jennifer J

Senior Member
Messages
997
Location
Southern California
:thumbsup::thumbsup::thumbsup::thumbsup::thumbsup:

An excited member just emailed me about this! It's too good to not share right away.

I don't know the details, Terri Wilder posted it on Twitter and she'll be sharing more (see below) and Tom Kindlon retweeted (if I understand this right).

Terri Wilder‏@WildNycgirl 2h2 hours ago
Won't be posted on NY gov website as letter sent out to NY MD only. I will write up something and post it on #MEACTION website in day or so.

Terri Wilder @WildNycgirl
·17h
Replying to @camcruise

I'm working on getting a clean copy to distribute. Basic info about ME, link to Jen Brea's TED talk, etc

Terri Wilder @WildNycgirl
·May 27
@HealthNYGov Commissioner Zucker --Thank you for sending out a letter on myalgic encephalomyelitis (ME) to every MD in NYS!

Thank you Commissioner Zucker :thumbsup: :thumbsup: and everyone who made this happen!

(Excuse the double, one ought to be more easily readable than the other, I can't figure out how to do this better right now.)

Enjoy! :)

ny commissioner.JPG



Edit 6/1/17. This is from part of #11 post:

You can download a PDF of the New York Department of Health letter here (thank you @Laurie P :)):

https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view
 
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Comet

I'm Not Imaginary
Messages
693
What a great letter! Thanks so much Terri Wilder and Commissioner Zucker! I will be taking a copy to my NY doc appt which should be in the next month or so. :)

Big thanks to everyone involved in accomplishing this. :angel:

@Hutan, that was one of my favorite lines too. :thumbsup:
 

Jennifer J

Senior Member
Messages
997
Location
Southern California
Yesterday and today I went to watch Jen's talk on TED Talks. Each time I've tried to watch it, the visual freezes at some point while she continues speaking. I'm concerned about this because of the letter the Commissioner sent to all the NY doctors. In the letter he writes to learn more about ME/CFS from the patient perspective, consider watching Jen's Ted Talk... It would be good to have all the visuals in Jen's talk if they decide to watch it and for anyone watching.

Can anyone check this out and see if this is happening for you, too? Thank you.

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
 

Old Bones

Senior Member
Messages
808
Yesterday and today I went to watch Jen's talk on TED Talks. Each time I've tried to watch it, the visual freezes at some point while she continues speaking.

Can anyone check this out and see if this is happening for you, too?

@Jennifer J As requested, I just watched Jen's TED talk via the link you provided. It worked perfectly all the way to the end -- both visuals and sound.
 

Jennifer J

Senior Member
Messages
997
Location
Southern California
@Laurie P, thank you for this! :)

You can download a PDF of the New York Department of Health letter here:

https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view


This is so good to hear Binkie4! :thumbsup: (@Binkie4 wrote the below in another thread before Laurie posted the above download.)

Binkie4 quote:

I ( actually DH) made the best copy we could of the NY letter and put it into my gp's hands. He started to read and absorb it!

I would like to give a copy of any letter indicating a change of policy to my GP. I think this is one way we can all push. His attitude is changing. We need to continue the momentum.

Yes, let's share wherever we can these things and keep the momentum going.

Let's work too to get all states and countries to do what the Commissioner of NY did and the chair of the Northern Ireland Health and Social Care board (http://forums.phoenixrising.me/inde...-all-gps-re-physiological-nature-of-me.51873/).

Good work everyone who put in time, much effort, and many for years, to make these things possible! Thank you!!! :hug:
 
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Forbin

Senior Member
Messages
966
Not to be picky, but, in the first paragraph, ME/CFS is called a "rare disorder."
Welcome to my May letter. This month, I’d like to call your attention to new federal regulations regarding the use of codeine and tramadol in children and a rare disorder called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Later, the letter says...
ME/CFS is believed to impact approximately one million Americans, but the actual number may be much higher.

Apparently, in the US, a disorder is classified as "rare" when it affects fewer than 200,000 Americans.
https://www.rarediseaseday.org/article/what-is-a-rare-disease.

By that metric, ME/CFS doesn't qualify as "rare," even when the conservative estimate of one million is used (which I'm pretty certain is an estimate of the number of adults with the disease).
 
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Alvin2

The good news is patients don't die the bad news..
Messages
2,996
Not to be picky, but, in the first paragraph, ME/CFS is called a "rare disorder."


Later, the letter says...


Apparently, in the US, a disorder is classified as "rare" when it affects fewer than 200,000 Americans.
https://www.rarediseaseday.org/article/what-is-a-rare-disease.

By that metric, ME/CFS doesn't qualify as "rare," even when the conservative estimate of one million is used (which I'm pretty certain is an estimate of the number of adults with the disease).
Your correct but perhaps two wrongs make a right, by saying rare when docs see it they are more likely to say oh thats rare disease we got the memo about instead of yeah right this common disease that appeared overnight.
 

Forbin

Senior Member
Messages
966
Your correct but perhaps two wrongs make a right, by saying rare when docs see it they are more likely to say oh thats rare disease we got the memo about instead of yeah right this common disease that appeared overnight.

I did wonder if it might have been a way of softening the introduction of ME/CFS by saying, "Hey, it's not your fault you've never heard of it. It's rare."

I guess I mention this because when I gave my doctor the SEID overview, he scanned it and blurted out, "A million people!? That's a lot!" I think he'd been under the impression that it was a very rare condition of maybe 20,000 people.
 

Alvin2

The good news is patients don't die the bad news..
Messages
2,996
I did wonder if it might have been a way of softening the introduction of ME/CFS by saying, "Hey, it's not your fault you've never heard of it. It's rare."

I guess I mention this because when I gave my doctor the SEID overview, he scanned it and blurted out, "A million people!? That's a lot!" I think he'd been under the impression that it was a very rare condition of maybe 20,000 people.
Indeed, though when i mention it i try not to go into more detail then necessary, doctors can be extremely intransigent
 

Jennifer J

Senior Member
Messages
997
Location
Southern California
@Jennifer J I showed this letter to my Kaiser Permanente primary care doc, and he said he showed it around to his fellow doctors.

Slowly perceptions are changing.

@Webdog, this is encouraging good news! Made my day to hear this and think about it. That's great that you shared it with your doctor, he's receptive and is going to show it to his fellow doctors. :thumbsup:
 
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Anne

Senior Member
Messages
295
Question: Is the New York Health Commissioner the head of New York State Department of Health?

I'm including a news piece on this in my Swedish ME newsletter, which reaches 2600 professionals, and I'd like to know how best to word it. If the Commissioner also is the head of the department, I'll put that in.

Grateful for help.

@medfeb
 

medfeb

Senior Member
Messages
491
Question: Is the New York Health Commissioner the head of New York State Department of Health?

I'm including a news piece on this in my Swedish ME newsletter, which reaches 2600 professionals, and I'd like to know how best to word it. If the Commissioner also is the head of the department, I'll put that in.

Grateful for help.

@medfeb

Yes, he is