#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

Nielk

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PETITION UPDATE
Your voices are being heard!
Thanks to you, the petition has reached over 600 signatures in just one day. HHS has been notified of this petition to them. Let’s put our efforts together to raise awareness of the issue of recognition for ME as defined by ICC. Please continue to share the petition and encourage others to sign it. Ps - love all your comments.

Please sign and share widely - https://www.change.org/p/the-us-department-of-health-and-hu…
 

Wally

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2115 signatures as of 12:55 am (PST) - 7/30/2018

Link to sign the petition - https://www.change.org/p/the-us-dep...ic-encephalomyelitis-me-as-defined-by-icc-now

When a petition like this one gets signatures in the thousands is when it can get some attention at a Congressional level. So if this petition interests you and you have not yet signed up think about doing so and encourage your friends and family to sign up as well.

@lilpink - I am going to add a link for this petition to the “Advocacy and Fundraising” Section of the Forum under the topic “Petition” to make sure that the petition it is not overlooked in its current location under “News and Research”. See, https://forums.phoenixrising.me/ind...-recognize-m-e-as-defined-by-the-i-c-c.60941/
 
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Wally

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https://www.change.org/p/the-us-dep...ic-encephalomyelitis-me-as-defined-by-icc-now
We are international medical practitioners and researchers in the field of myalgic encephalomyelitis (ME), ME advocates, patients and their supporters. We are located in the US and in other countries that are affected by US health policy. We call on the US government health agencies to accurately name, define, fund and represent the distinct biomedical disease ME which has been recognized by the World Health Organization (WHO) since 1969 as a neurological disease with the ICD code G93.3 and has been well-defined by the 2011 International Consensus Criteria (ICC). Since October 2015, the US ICD-10-CM classifies ME with the same neurological code, G93.3, as the WHO ICD.

We demand the US Department of Health and Human Services (HHS) and all its agencies:

  • Adopt ICC for diagnostic purposes
  • Adopt ICC for research purposes
  • Use ICC on all HHS and all HHS agency websites and all educational materials created by or for HHS and its agencies
  • Educate medical practitioners to use the IC Primer for diagnosis
  • Disseminate the IC primer to educate medical practitioners on testing and treatment
  • Insist that ME researchers use ICC for their research funded by HHS or HHS agencies
Another thread about this petition is located here on the Forum - https://forums.phoenixrising.me/ind...ic-encephalomyelitis-as-defined-by-icc.60888/
 

Wally

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@Nielk - I note that the petition has been addressed to individuals at the HHS, NIH and CDC and I was wondering if you will also be sending a copy of the signed petition to the Congressional Committees who have oversight over the HHS, NIH and CDC? Since this petition seems to be gathering a lot of signatures (currently over 2000 signatures), I would think that members of Congress would want to be made aware of the interest in this subject matter.
 

lilpink

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Judee

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Are you just wanting people with ME to sign this because a lot of people here feel like they have CFS (which may not be the same disease but I feel is in the same spectrum)?

My growing impression is that most USA patients feel like there is definitely overlap between the two and don't mind the ME/CFS moniker but that people (not all) in the UK or Europe feel offended if the two are lumped together...almost like if you have ME, you have a real disease; if you have CFS, you don't--which kinda feels a lot like the same thing the mental health profession is doing to us. :(

Also, why ICC and not CCC? With CCC, my symptoms are reflected almost completely. I could circle at least one thing in each category and really 3-5 in most of them.

Anyway, hope I don't stir up a hornet's nest with my questions.:nervous::nervous:

Maybe I'm not reading the impressions correctly but even one of the Workwell researchers said the same thing on one of his videos. He said they thought they were helping the patients by getting CFS designated as ME/CFS by the government here but then got a boatload of emails from overseas blasting them for putting the two together.
 
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lilpink

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I'm sure @Nielk will add something. As the person who has posted this here I, personally, feel it's imperative for ME to be defined very precisely not just for the benefit of people with ME but also for those who might stand outside that category and with every hope that just as much effort will be put into trying to properly diagnose the both the 'mis-diagnosed' and the 'missed-diagnosed' which, if the criteria are too broad, is unlikely to happen. I 'hear' the theory that if everyone is studied then the data will help sift individuals into their allotted diagnostic 'set' but in reality this is unlikely to happen (imo) and is possibly unique in terms of defining disease ? It's not usual to broaden criteria to make diagnosis more fluid, without biomarkers surely it's more usual to tighten criteria to ensure the cohort is properly described and therefore the results of research are meaningful? If the results aren't meaningful the hope of a biomarker is dampened considerably. Once biomarkers exist, for any disease, they can be employed to 'sift' and those who might have been formerly 'lumped' into the 'ME' basket but have negative results (which of course could be any of us, including those of us who *think* we are classic presentations of 'ME') can at least start to look elsewhere. And those researchers who are interested in these diseases, which on the face of it look similar in some respects, should be intrigued enough to more precisely define what is going on in those individuals who lie outside what might be captured using ICC . It really isn't a case of trying to cause 'offence' or that one set of patients is more deserving than another..it's simply trying to expedite science by using criteria sensibly and not wallowing in the sort of muddle which has befallen us for over 30 years.

In other words my belief is that demanding ICC as a good working tool for ME, both clinically and in research, will help all patients in time to be treated better and more appropriately. As such I would urge everyone who cares about accuracy in science to sign this petition so that the Consensus shaped by experts in the field can be put to best use.
 

Neunistiva

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USA patients feel like there is definitely overlap between the two and don't mind the ME/CFS moniker but that people (not all) in the UK or Europe feel offended if the two are lumped together..
I am European and I am ok with ME/CFS. I think it's not good, but it's the best we have right now. I wish we had biomarkers and proper name for the illness (and a cure!), but I think we need to accept reality and keep our fight focused.

I didn't fulfill ICC for the first three years of my illness, and now I've been fulfilling it for 7 years and am bedridden and severe.

ICC for research purposes? Yes, we need to make sure no one gets in the study who doesn't have ME/CFS. I like it the best when researchers use ICC, CCC and IOM all at once.

ICC for diagnostic purposes? Absolutely not! Strength is in numbers. With 95% of us undiagnosed we are missing so many of our voices. Why alienate even more sufferers?

Ultimately, I am not going to sign anything that attacks IOM report which was one of the biggest steps at getting this illness finally recognized as a physical illness.
 

Nielk

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@Nielk - I note that the petition has been addressed to individuals at the HHS, NIH and CDC and I was wondering if you will also be sending a copy of the signed petition to the Congressional Committees who have oversight over the HHS, NIH and CDC? Since this petition seems to be gathering a lot of signatures (currently over 2000 signatures), I would think that members of Congress would want to be made aware of the interest in this subject matter.
Yes, Wally. It's a good idea and we will be doing that. I believe this is the oversight committee? https://energycommerce.house.gov/subcommittee/health/
 

Nielk

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Are you just wanting people with ME to sign this because a lot of people here feel like they have CFS (which may not be the same disease but I feel is in the same spectrum)?

My growing impression is that most USA patients feel like there is definitely overlap between the two and don't mind the ME/CFS moniker but that people (not all) in the UK or Europe feel offended if the two are lumped together...almost like if you have ME, you have a real disease; if you have CFS, you don't--which kinda feels a lot like the same thing the mental health profession is doing to us. :(

Also, why ICC and not CCC? With CCC, my symptoms are reflected almost completely. I could circle at least one thing in each category and really 3-5 in most of them.

Anyway, hope I don't stir up a hornet's nest with my questions.:nervous::nervous:

Maybe I'm not reading the impressions correctly but even one of the Workwell researchers said the same thing on one of his videos. He said they thought they were helping the patients by getting CFS designated as ME/CFS by the government here but then got a boatload of emails from overseas blasting them for putting the two together.
We believe that ME and CFS are not the same nor interchangeable. The IOM Report authors have stated the same as well. They do have some overlapping symptoms but so do many illnesses. For example, fibromyalgia has common symptoms with ME as well but it's considered a separate disease - even though some people suffer from both.

The reason we are asking for ICC is that the ICC is based on more current and has been created both for diagnostic and research purposes. Those who do not fully fulfill the ICC definition will be considered "atypical ME".

The main issue is not with the name but with the definition it represents.
 

Nielk

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ICC for diagnostic purposes? Absolutely not! Strength is in numbers. With 95% of us undiagnosed we are missing so many of our voices. Why alienate even more sufferers?
There is no strength in numbers if the majority of people are misdiagnosed with the disease and actually suffer from some other illness for which they are not receiving the accurate care and treatment for their illness.
 

lilpink

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I think David Tuller's latest blog http://www.virology.ws/2018/07/30/trial-by-error-the-cdcs-update-for-healthcare-providers/) (simply explains the issue when he says:

""In a study, you want to ensure that you have as homogeneous a population as possible so that you know you are studying the illness of interest and not something else. To date, CDC and the Department of Health and Human Services have shown little understanding of the urgent need to converge on a research case definition so that it is easier to compare studies. The new information for healthcare providers largely skirts the issue. But as patients and others have noted, applying the IOM case definition in research would yield populations more likely to include people with depression and other conditions that could overlap with ME/CFS, so it would be a challenge to interpret the results. Federal health officials must do better."
 

Neunistiva

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There is no strength in numbers if the majority of people are misdiagnosed with the disease and actually suffer from some other illness for which they are not receiving the accurate care and treatment for their illness.
I just explained to you that for the first 3 years od my illness I did not satisfy ICC. In the fourth year of my illness I was diagnosed with ME/CFS by none other than the one of the authors of ICC.

We know that the most important thing for ME/CFS is resting in the beginning of the illness. Requiring ICC as diagnostic criteria is going to harm people who have post-exertional malaise.but don't satisfy ICC. Like me who is bedridden now because I waited so long for proper diagnosis.

Demanding ICC for research is ok because it's better to exclude people who have it than include people who don't and muddy the results.

Demanding ICC for diagnosis is elitist and cruel towards people who don't satsify ICC but have PEM and are harmed by exertion. They have the right to know they might have ME/CFS.

applying the IOM case definition in research would yield populations more likely to include people with depression and other conditions
Can someone please explain to me how can using IOM criteria select for people who only have depression and not ME/CFS? Depression does not cause PEM, depressed people feel a bit better after exercise.

As far as I know, no psychiatric illness causes PEM. So what's the problem?
 
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