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

[Jennifer J]

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)

https://twitter.com/i/web/status/868694846739009540

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 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!

https://twitter.com/i/web/status/868856048895086593

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

 

[Hutan]

Wow, what a great letter from, I presume, a very influential person.

So much to like in this letter.

Few things are as detrimental to a patient's health and well-being as not being taken seriously when presenting a problem to a health care provider.

Thank you to all involved.

 

[Comet]

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.

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

 

[suseq]

Wow was my first thought too! Hope this enlightened awareness spreads. With thanks to all involved.

 

[belize44]

This is truly exciting - a physician who is actually advocating for us!

 

[Snowdrop]

Brilliant.

Want to thank HZ on twitter? Handle: @HealthNYGov
Or generic email (don't know if there is a better connection): https://www.health.ny.gov/

 

[dangermouse]

Brilliant

 

[Jennifer J]

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]

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]

@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.

Yay! Good to hear. One less thing to try to straighten out. Thank you, @Old Bones!

 

[Jennifer J]

@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! (@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!!!

 

[Forbin]

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).

 

[Alvin2]

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]

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]

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

 

[me/cfs 27931]

@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.

 

[Jennifer J]

@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.

 

[Anne]

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]

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