CDC ME/CFS page, updated 30th May 2017

BurnA

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Does anyone know where the new website comes from - what was their mechanism or reason for updating?

Was it ever communicated why this was happening or did they ever invite any comments ?
 

Rooney

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Starlight, I second all. Well said.

I was part of the 7 site CDC study for three years and have waited a long time for the results of this effort.

I'm excited for the USA patients for the huge shift and hope it will travel to my compatriots overseas! Go David Tuller.
 
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Gemini

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I am collecting any comments I see in this thread and a few other places and will post a summary - may take me a week or so
Thank you, @medfeb.

Glad to see CDC acknowledge ME/CFS as an "Hidden Health Crisis," and use photos that are more realistic, finally.

Agree with @mango and others who are pointing out the range of symptoms and degree of disability experienced by the severely ill are still missing.

On the July 10, 2017 NIH Telebriefing patient Sonya Heller gave an excellent description of her severe ME/CFS.
NIH said a transcript will be posted next week. Perhaps you could suggest CDC staff review it and contact other severely ill patients for input?

Greatly appreciate all your efforts and outstanding work, Mary!:thumbsup:
 
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Anne

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I am collecting any comments I see in this thread and a few other places and will post a summary - may take me a week or so
Thank you @medfeb for this and for all your amazing work! Where would we be without you and other advocates extraordinnaires?

I'll add another comment:

Today I was asked by a person with ME if I could help her with her disability case. She needed links to trusted sources stating that ME is a serious and, in the vast majority of cases, chronic disease. So I checked the new CDC site with this in mind and found it lacking.

The text on the initial page doesn't convey the severity or chronicity of ME.

On the page "What is ME/CFS" they say, for example: "ME/CFS can last for years and sometimes leads to serious disability." I don't find this nearly strong enough. "Can" last for years? In the vast majority of cases, it's life-long. "Sometimes" leads to serious disability? I would say: in most cases it leads to serious disability.

So, sadly, I found I couldn't recommend this person to refer the disability agency to the CDC web pages. This is - still - a big problem.

Also very sadly, even the IACFS/ME Primer isn't clear enough about how disabling ME is or how it, for a very large percentage of sufferers, is chronic.

(Tagging @mango FYI)
 

Anne

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Thank you so much, @medfeb !

She is a Swedish patient. The whole world looks to the American agencies (so let's hope the current administration doesn't undermine their standing...) Funnily, I there is currently better information in this regard on the Stockholm Health Board website than on the CDC website. (That took A LOT of advocacy, too....)

Again, a thousand thanks!
 

medfeb

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Thank you so much, @medfeb !

She is a Swedish patient. The whole world looks to the American agencies (so let's hope the current administration doesn't undermine their standing...) Funnily, I there is currently better information in this regard on the Stockholm Health Board website than on the CDC website. (That took A LOT of advocacy, too....)

Again, a thousand thanks!
Can you send me a link to that site? I can use that.
Thanks Anne
 

medfeb

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@mango and @Anne - I just read through this site - its one of the best that I've seen at least as translated by Google below.

Anne, you said this was from the Stockholm Health Board website. Great to get this at the city level - we are also approaching cities and states but have not gotten this far yet. Do other cities provide information like this? And what information does the national health board or department provide?

English translation of the Stockholm Health Board website provided by Anne
https://translate.google.com/transl...-och-smarta/ME-CFS-Kroniskt-trotthetssyndrom/
 
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BUT I can still see one very bad advice still in it which im wondering if anyone can work with the CDC to help them fix it. In their sleep treatment they say "
  • Limit daytime naps to 30 minutes in total during the day."
That's the one that really stood out for me as well.

And it is dangerous for those who are not yet adults and are having that part of sleep hygiene forced upon them.

Anyone who has severe ME/CFS or crashes very badly will know that a 30min nap does NOTHING and in this situation the person may even need to be sleeping all day or even for several days to try to come out of a bad crash. So I personally think this poor bad advice should be removed.
I strongly agree.
 

mango

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Do other cities provide information like this? And what information does the national health board or department provide?
@Anne will be able to give you a much better reply when she's at the computer next time, I'll just leave a few links for you below :)

No, other cities don't provide info like this. The ones responsible for healthcare on a national level are the county councils ("landsting") and regions ("regioner"). Their medical information website is 1177.se.

1177 has separate sub pages for different counties/regions, but so far they all have exactly the same info for ME/CFS on all of them: https://www.1177.se/Stockholm/Fakta-och-rad/Sjukdomar/MECFS/

The ME/CFS content at 1177 used to be a lot better, written mainly by a ME/CFS expert -- clinician & researcher -- with a biomedical view of the disease. Sadly, the text was edited last year, by a person with a strong BPS view (you might recognise her name, she has published BPS research into ME/CFS and FM too, see for example threads here and here. Some of the people she collaborates with are working closely with Fink i Denmark...). More info and details on the changes here: http://forums.phoenixrising.me/inde...77-se-has-changed-their-info-on-me-cfs.45629/

P.S. We made a document that compared the two versions of the 1177 article in detail, and highlighted all the changes. I'd be happy to send it to you, if you're interested in that sort of thing?
 
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mango

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Anyone who has severe ME/CFS or crashes very badly will know that a 30min nap does NOTHING and in this situation the person may even need to be sleeping all day or even for several days to try to come out of a bad crash. So I personally think this poor bad advice should be removed.
I, too, strongly agree.
 

Anne

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@medfeb

As @mango says, in Sweden health care is organised regionally - the regional councils/boards are running the entire health care system. Therefore I would perhaps say the Viss.nu site, from the Stockholm Health Board/Stockholm County Council (translations vary) is maybe even stronger than the amazing NY letter, since this is the official, permanent web site of the health care organisation.

I think the last sentence is what you might want most, so in case Google is not up to scratch ;-) I'll translate that one:

"Prognosis
ME/CFS unfortunately often leads to long-term disability, only a few patients regain their pre-disease levels of functioning and activity. Children and adolescents generally have a better prognosis."


 

Anne

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@medfeb , a bit of an alert :woot: (if I'm not mistaken):

I think I just found out something which is a clear loss regarding the CDC website. We (RME, the Swedish ME Association) have a fact sheet regarding impairment and prognosis, where we quote reports, articles and official sites like IOM/NAM, CDC, etc. Link to our fact sheet: http://www.rme.nu/fakta_referenser_prognos.pdf

We have quoted the (previous) CDC website saying:
“CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.” http://www.cdc.gov/cfs/symptoms/index.html

This sentence is now not to be found on the CDC site - or am I missing it?

This is a key sentence which we have used in communication with disability agencies, health care providers, decision makers, etc. It's a shame to see it gone (if I'm not mistaken) and it would be fantastic if they restored it (changing "CFS" to "ME/CFS").

Tagging @mango FYI
 

taniaaust1

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Yes. They also mention tai chi. Coincidentally yesterday someone on PR mentioned that they had collapsed doing tai chi due to orthostatic intolerance. The slow, upright movements and held poses aren't great for many of us. .
Tai Chi is usually quite bad for many of us who the orthostatic intollerance with this illness as its like standing. I had to give up doing Tai Chi when I got sick with this, I'd done Tai Chi for a couple of years too. I do not think its an appropriate exercise recommendation for us seeing near all of us on testing show symptoms on orthostatic testing.