Articles on the release of the IOM report

[Valentijn]

I couldn't agree with you more! Some people I meet do the same thing in a storm of reaction, projection and misinformation. One of them is even a close family member! What is it about our type of illness which seems so utterly intolerable to some people? I got completely sick of the "It's all Lyme disease" (thyroid, B-12 deficiency, gluten intolerance,) crowd too. Trying to reason with these people is usually hopeless, though there do seem to be a few who are teachable. But with most of them, I immediately shut the topic off, and in many cases have to keep my distance afterwards.

They generally have good intentions, and have some willingness to listen. But the trolls, as well as the doctors who have already committed to negligent or abusive treatment of ME patients, are a lost cause. And those doctors are the ones who are in the position to do the most damage, both professionally and by speaking as an "authority" on medical issues.

 

[Sing]

They generally have good intentions, and have some willingness to listen. But the trolls, as well as the doctors who have already committed to negligent or abusive treatment of ME patients, are a lost cause. And those doctors are the ones who are in the position to do the most damage, both professionally and by speaking as an "authority" on medical issues.

We really have to attain tremendous mental health--maturity, balance and perspective--to deal with the crazy and abusive ways we've been treated. We can't "afford" depression or psychiatric difficulties ourselves. I find there is a joke in this, a great irony. We are too physically disabled to afford being mentally disabled too. Thank you for being one of the stabilizing forces here on PR.

Sing

 

[Wildcat]

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The absolute worst possible reporting of the IOM Report and name. It could hardly be worse or more trivialising:


'Renaming Fatigue, How Tiredness May Be A Disease'
http://www.koat.com/news/renaming-fatigue-how-tiredness-may-be-a-disease/31231984

'Do you have trouble waking up.. How tired are you in the morning?..... "I am so tired I would love to stay in bed" ...... endless film of people getting out of bed in the morning..... now its a disease......'

"I've been tired for 15 years" trills the presenter happliy. "We are usually pretty sleepy here in the mornings ... Here's an app we use to help you Wake Up!"
.

 

[Nielk]

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The absolute worst possible reporting of the IOM Report and name. It could hardly be worse or more trivialising:


'Renaming Fatigue, How Tiredness May Be A Disease'
http://www.koat.com/news/renaming-fatigue-how-tiredness-may-be-a-disease/31231984

'Do you have trouble waking up.. How tired are you in the morning?..... "I am so tired I would love to stay in bed" ...... endless film of people getting out of bed in the morning..... now its a disease......'

"I've been tired for 15 years" trills the presenter happliy. "We are usually pretty sleepy here in the mornings ... Here's an app we use to help you Wake Up!"
.

Could it get any worse?

 

[Wildcat]

.
@Nielk and All

That news report is in no uncertain terms telling people who have trouble getting out of bed in the morning, or who take a long time to wake up, that they now Have A Disease called SEID..... then its..... "but the problem is "There Is No Test!"

Grotesque. They have regressed several decades. .
.


The Report continues in writing:

'Millions of Americans suffer from chronic fatigue, and some are calling it an epidemic.'

'A new study done by the Institute of Medicine said chronic fatigue is a syndrome and a debilitating disease. It’s so bad that the institute is thinking about officially changing fatigued to Systemic Exertion Intolerance Disease.

KOAT medical expert Dr. Barry Ramo said the syndrome is tricky to diagnose because there are no blood tests to prove the disorder.

The only way professionals can diagnose SEID is to ask the following three questions:

Have you been tired in the last six months?

Do you sleep and wake up feeling refreshed?

Are your symptoms getting worse?'

http://www.koat.com/news/some-call-chronic-fatigue-an-epidemic/31237838#comments
.

 

[Nielk]

.
@Neilk and All

That news report is basically telling people who have trouble getting out of bed in the morning, or who take a long time to wake up, that they now have a Disease called SEID..... but the problem is There Is No Test!

Grotesque. They have regressed several decades. .
.

Or people who like to drink coffee!

 

[dancer]

We need an "anti-defamation league" to counter these misrepresentations. I'm grateful for the patients and doctors who write in to the error-ridden reporting to give corrections.

 

[Roseblossom]

Lots of science and medical journals are reporting too:

JAMA Journal of the American Medical Association: http://jama.jamanetwork.com/article.aspx?articleid=2118591

The BMJ British Medical Journal: http://www.bmj.com/content/350/bmj.h775

BBC ScienceAlert: http://www.sciencealert.com/chronic...-as-a-disease-in-the-us-and-it-has-a-new-name

Eureka Science News: http://www.eurekalert.org/pub_releases/2015-02/naos-nir021015.php

American Association for the Advancement of Science (AAAS): http://news.sciencemag.org/health/2015/02/goodbye-chronic-fatigue-syndrome-hello-seid

WebMD: http://www.webmd.com/chronic-fatigu...ame-new-criteria-for-chronic-fatigue-syndrome

Consultant 360: http://www.consultant360.com/exclusives/new-name-diagnostic-criteria-chronic-fatigue-syndrome

MedPage Today: http://www.medpagetoday.com/PrimaryCare/GeneralPrimaryCare/49970

NEJM Physicians' First Watch: http://www.jwatch.org/fw109853/2015/02/11/new-name-and-diagnostic-criteria-proposed-chronic-fatigue

Medical Daily: http://www.medicaldaily.com/chronic-fatigue-syndrome-now-accepted-illness-institute-medicine-321892

MNT Medical News Today: http://www.medicalnewstoday.com/articles/289297.php

News Medical: http://www.news-medical.net/news/20...ic-criteria-for-chronic-fatigue-syndrome.aspx

and http://www.news-medical.net/news/20...ies-five-main-symptoms-to-diagnose-MECFS.aspx

Annals of Internal Medicine: http://annals.org/article.aspx?articleid=2118972

Clinical Neurology News: http://www.clinicalneurologynews.co...378825&cHash=44d1bcb68fbe6dc40ffb3306031b7bd3

APTA American Physical Therapy Association: http://www.apta.org/PTinMotion/News/2015/2/12/ChronicFatigueIOM/

NP Natural Practitioner: http://naturalpractitionermag.com/i...se-that-needs-proper-diagnosis-and-treatment/

Sydney Telegraph: http://www.dailytelegraph.com.au/ne...215620504?nk=a8fde65943008a5f16ac300a30daad00

San Francisco SFGate: http://www.sfgate.com/health/article/Fatigue-syndrome-validated-by-influential-group-6074054.php

Chicago Daily Herald: http://www.dailyherald.com/article/20150210/business/302109906

Lots of media are running the the Associated Press article by
Lauran Neergaard: http://hosted.ap.org/dynamic/stories/U/US_MED_CHRONIC_FATIGUE?SITE=AP&SECTION=HOME&TEMPLATE=DEFAULT

Canada Globe & Mail: http://www.theglobeandmail.com/globe-debate/time-to-take-chronic-fatigue-seriously/article23023462/

Canada Calgary Herald:
http://www.calgaryherald.com/health/Seeking redefine chronic fatigue syndrome advisory group urges/10801848/story.html

Yahoo news: https://ca.news.yahoo.com/finally--chronic-fatigue-syndrome-will-be-taken-seriously-201503515.html

Curacao Chronicle: http://curacaochronicle.com/health/...me-is-a-real-and-serious-disease-experts-say/

Caribbean 360: http://www.caribbean360.com/news/chronic-fatigue-syndrome-is-a-real-and-serious-disease-experts-say

Pioneer News: http://www.piercepioneer.com/agencies-discuss-new-understanding-chronic-fatigue-syndrome/38016

Diabetes Insider: http://diabetesinsider.com/chronic-fatigue-redefined/37936

Time Magazine: http://time.com/3706453/chronic-fatigue-syndrome-systemic-exertion-intolerance-disease/

Daily Mail U.K.: http://www.dailymail.co.uk/health/a...s-draw-new-guidelines-diagnose-condition.html

Japan Health Chosun: http://health.chosun.com/site/data/html_dir/2015/02/11/2015021102327.html?CThealth

And more

 

[Roy S]

　
The AP story by Lauran Neergaard was on the front page of the Decatur, Illinois, Herald and Review on Wednesday. I live nearby and this was a very pleasant surprise.

http://herald-review.com/news/natio...cle_e129c704-0e4d-5323-9f33-0f46489114b2.html
　
It was also in this paper that I've never heard of in the capital city of Springfield.

http://www.springfieldnewssun.com/a...-new-name-better-diagnosis-for-chronic/nj76g/

Other than that I've not been able to find any other stories in Illinois -- even in Chicago.
　
　

 

[allyann]

Great article http://www.dailymail.co.uk/health/a...s-draw-new-guidelines-diagnose-condition.html

The Blue boxes are really good descriptions

 

[Wally]

“The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives,” said Dr.Jose Montoya, an infectious disease specialist who helped establish a chronic fatigue syndrome team atStanford Universitya decade ago. “For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words.”

http://www.sfgate.com/health/article/Fatigue-syndrome-validated-by-influential-group-6074054.php

Plus a comment from one of our members:
"Susan Kreutzer, a Danville resident with the syndrome, said she’s not enthusiastic about the proposed new name and hasn’t had time yet to read and digest the full report. But in a way, she said, the content of the report doesn’t matter as long as it leads to more funding for research and support for patients".
“What I want to see is someone in Congress get pretty riled up by this report — have them see how many people are affected, how these people are really ill, how they’ve been mistreated,” Kreutzer said. “I’d just like to light a fire. I don’t know if this report will do that, but I suppose it gives us some ammunition.”

If you read the article, please don't forget to read the comments. Much of what is said when you are interviewed gets left on the editing room floor, but I always try to get some additional information out there through the comment section.

My comments did end up being silenced for awhile as their software labeled me as a potential "Spammer", but eventually I broke free and in doing so ended up with some double posts.

You might not agree with my opinions/thoughts, but if I am contacted for an interview I will try my best to advocate for this illness.

Please think about clicking on the article (it does really help to let the paper know that this topic is of interest to their readers).

Also, if you feel so inclined to do some (additional) advocating online, please include your own comments about the article. We have some pretty influential people in the S.F. Bay Area (think deep pockets, big medical institutions and lots of techy kind of gadgets), as well as some very powerful Congressional representatives. It is highly likely that they or someone who advises them will be reading this article (and hopefully the comments). Don't assume your concerns will be heard unless you are willing to make some noise in lots of different places where the movers and shakers hang out.

Looks like we have another Forum member hanging out in Washington D.C. and I am sure that he would appreciate some reinforcements showing up to help out in the comment section. See, http://www.washingtonpost.com/natio...358912-b140-11e4-bf39-5560f3918d4b_story.html

 

[Valentijn]

'Renaming Fatigue, How Tiredness May Be A Disease'
http://www.koat.com/news/renaming-fatigue-how-tiredness-may-be-a-disease/31231984

Even worse, they just wiped out almost all the comments pointing out their (many) errors. I think they're running a deliberate smear campaign.

 

[Valentijn]

And now 7 of the initial comments are back (it was 1 for a bit) but several are still missing. At any rate, I've used the site utility to leave a comment for the News Director, firmly stating my objections to their inaccuracies and the slandering of a disabled population, and requesting that they correct it.

They also had some extra text under the video briefly, which was just as bad. Basically, a doctor will ask three questions: "Feeling fatigue for 6 months? Tired after sleep?" and something very similar.

Oh, they have two URLS: http://www.koat.com/news/some-call-chronic-fatigue-an-epidemic/31237838
and http://www.koat.com/news/renaming-fatigue-how-tiredness-may-be-a-disease/31231984
I think they were redirecting from one to the other for a bit.

Have you been tired in the last six months?

Do you sleep and wake up feeling refreshed?

Are your symptoms getting worse?

They cite their "Medical Expert" in the new article. Sounds like quite a quack.

 

[Wally]

If you read the article, please don't forget to read the comments. Much of what is said when you are interviewed gets left on the editing room floor, but I always try to get some additional information out there through the comment section.

My comments did end up being silenced for awhile as their software labeled me as a potential "Spammer", but eventually I broke free and in doing so ended up with some double posts.

You might not agree with my opinions/thoughts, but if I am contacted for an interview I will try my best to advocate for this illness.

Please think about clicking on the article (it does really help to let the paper know that this topic is of interest to their readers).

Also, if you feel so inclined to do some (additional) advocating online, please include your own comments about the article. We have some pretty influential people in the S.F. Bay Area (think deep pockets, big medical institutions and lots of techy kind of gadgets), as well as some very powerful Congressional representatives. It is highly likely that they or someone who advises them will be reading this article (and hopefully the comments). Don't assume your concerns will be heard unless you are willing to make some noise in lots of different places where the movers and shakers hang out.

Looks like we have another Forum member hanging out in Washington D.C. and I am sure that he would appreciate some reinforcements showing up to help out in the comment section. See, http://www.washingtonpost.com/natio...358912-b140-11e4-bf39-5560f3918d4b_story.html

I have added* another comment to the San Francisco Chronicle article at http://www.sfgate.com/health/article/Fatigue-syndrome-validated-by-influential-group-6074054.php. *Currently this comment does not appear in the comment section, as it is being held up in their "Spam" filter - hopefully it will be released soon.

Understanding and change will not happen unless we are willing to open our eyes and see the real truth about this illness.

Please consider taking a few extra minutes to watch this short video to help open your eyes to the real story of this illness.

For more information about this video, see the Facebook Page and Website for this documentary.
1) https://www.facebook.com/CFSDocumentary
2) http://mecfsdocumentary.com/

If you want to know more about research into this illness that is happening right here in the S.F. Bay Area, check out what these word class physicians and researchers are working on. http://www.openmedicinefoundation.org/

My earlier comments also reference to Jennifer Brea's documentary "Canary in a Coal Mine" and to a slighter long trailer for Ryan Prior's documentary. The video linked above is only 3 minutes long. It might be worthwhile to include links to these documentaries in comments to articles appearing elsewhere on the web. Sometimes a picture (video) is worth a thousand words.

(@RyanPrior and @JenB )

 

[Roy S]

The Huffington Post published the AP story yesterday.
　
http://www.huffingtonpost.com/2015/...ame_n_6671122.html?ncid=fcbklnkushpmg00000030

 

[Valentijn]

Finally something on a Dutch news site, though it's not one of the big ones I think: http://www.welingelichtekringen.nl/...we-naam-en-nieuwe-diagnostische-criteria.html

They've translated SEID as "systemische inspanningsintolerantie ziekte", and it looks like a good article.

 

[JayS]

And now 7 of the initial comments are back (it was 1 for a bit) but several are still missing. At any rate, I've used the site utility to leave a comment for the News Director, firmly stating my objections to their inaccuracies and the slandering of a disabled population, and requesting that they correct it.

They also had some extra text under the video briefly, which was just as bad. Basically, a doctor will ask three questions: "Feeling fatigue for 6 months? Tired after sleep?" and something very similar.

Oh, they have two URLS: http://www.koat.com/news/some-call-chronic-fatigue-an-epidemic/31237838
and http://www.koat.com/news/renaming-fatigue-how-tiredness-may-be-a-disease/31231984
I think they were redirecting from one to the other for a bit.


They cite their "Medical Expert" in the new article. Sounds like quite a quack.

This video has been scrubbed. That was one of the worst reports I've ever seen. They must have been deluged in complaints.

 

[Wally]

I currently have three (3) comments waiting in the moderation line at the New York Times for commenting on Dave Tuller's article. I had to split my comments up to fit within the paper's 1500 character allotment per comment. Here is how the comments will appear, if they will allow me to post more than one comment.

Understanding and change will not happen unless we are willing to open our eyes and see the real truth about this illness.

Please consider taking a few extra minutes to watch this short video to help open your eyes to the real story of this illness.

For more information about this video, see the Facebook Page and Website for this documentary.
1) https://www.facebook.com/CFSDocumentary
2) http://mecfsdocumentary.com/

If you want to know more about research into this illness, check out what these world class physicians and researchers are working on. http://www.openmedicinefoundation.org/

For many patients, the illness (known as “Myalgic Encephalomyelitis” (M.E.), which was renamed in the U.S. in the 1980’s to “Chronic Fatigue Syndrome” (C.F.S.), following two large suspected cluster outbreaks in Incline Village, Nevada and Lyndonville, New York) is a complex neurological, endocrine, immune illness with a suspected viral etiology and possible genetic, inflammatory and environmental toxicity components.

Many of the symptoms of this illness have similarities to other illnesses such as Acquired Immune Deficiency Syndrome (AIDS), Multiple Sclerosis (MS), Amyotrophic Lateral Sclerosis (ALS), Autism, Gulf War Syndrome (GWS), Arthropod Borne Illness Diseases (i.e. Lyme, Borrelia and other tick associated bacterial pathogens), Chronic and Acute Herpesvirus Illnesses, Parkinson’s Disease, Chemical and other Environmental Sensitivities.

These types of illnesses seem to be expanding exponentially around the world. We don’t have any more time to waste to try to push the science forward to crack the code on why we seem to be plagued with such chronic and devastating illnesses.

The bottom line is that this Report from the Institute of Medicine will only be more words on paper, if our government continues to underfund research, treatment and education for this illness. Perhaps this video clip about a documentary (currently in production) will help you understand what people with this illness are facing.

For more information about this documentary, check out the “Canary in a Coal Mine” website at http://www.canaryinacoalminefilm.com/#!and and their Facebook page at https://www.facebook.com/canaryfilm/info?tab=page_info

If you like these comments and think they can be used for commenting on other sites, let me know (send me a PM or e-mail me at WallaceAlvinCleaver@gmail.com) and I will see if I can get them accepted for publication. Alternatively, feel free to cut and paste any part of these comments that you might like to post with your own comment.

(@RyanPrior, @JenB, @caledonia)

 

[Roy S]

The Washington Times published the AP story.
http://www.washingtontimes.com/news...w-name-better-diagnosis-for-chronic/?page=all
　
　
-- and the Solve ME/CFS Initiative reports that there are 300 stories about the IOM report.

 

[Sing]

Thank you, Wally, what you wrote is terrific! Thank you for persisting. Thanks to everyone who tries to correct and expand upon these reports.