Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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MEAdvocacy.org Update and a Call for Continued Support

Discussion in 'Phoenix Rising Articles' started by Nielk, Feb 23, 2015.

  1. Kati

    Kati Patient in training

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    The survey supported by ME Advocacy is biased. Their answer choices veers towards what they want to prove, and do not aim at seeing all viewpoint. For instance, more than one question I would have answered none of the above, starting with question 1 (1. Please click the box below that best describes your opinion about the use of SEID (systemic exertion intolerance disease) as the new name for this disease) My best answer is that it is an acceptable placeholder until more is known about the illness, biomarkers and pathology, however there is no such answer, not even an 'other' option to leave a comment for this )

    The fact that patients may not want to answer your questionnaire means that your results will be skewed, as more people dissatisfied with the report will answer.
     
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  2. caledonia

    caledonia

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    ME and CFS listed as two different diseases in the ICD-10-CM disease classification and diagnostic code. If you have one, you can't have the other. We are critiquing the IOM criteria as they do not look like they will be good for severe ME patients, therefore we need to establish ME separately to get severe ME patients the help they need.

    In a perfect world, there would not be this confusion and we could just get on with research funding - thank you US govt. (sigh). I don't know of any other disease which has a mess like this to work through.
     
  3. caledonia

    caledonia

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    The survey is split tested to avoid bias - half the people get one which asks positive questions about SEID, the other one gets negative questions about SEID.
    For question #1, it sounds like you would want to answer that the name is good.
    There is a comment box on the last screen where you could put your comment about the placeholder.
     
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  4. Sasha

    Sasha Fine, thank you

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    Thanks for your reply, but my main concern was the questions that I led on:

    How do you know that your 800 members and the 4600 people who liked/shared you on social media approve of your post-report stance?

    Do you have any way of surveying their opinion?

    Are you at all concerned that people who supported you in opposing the IOM process might actually be in favour of the report itself, now that they've seen it?​

    Since I started to write that post, I see two people here have said that they donated to MEAdvocacy in the past but don't support its current line. I do think this is an important issue.
     
  5. Kati

    Kati Patient in training

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    @caledonia you cannot tell me what to answer to your own survey. In asking for a survey you are asking for people's opinions but in this case, you are basically on a mission to prove patients are dissatisfied. It is obvious

    My answer was none of the above, there is no room for that. I prefer not to answer this kind of survey.
     
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  6. caledonia

    caledonia

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    I really wish that there could be an independent study of the IOM criteria used on real doctors and real patients. Then we could know for sure what to support or not support. I would rather see something like this sooner rather than later. I think it was 10 or 15 years post Fukuda that we figured out it was a loose criteria and not producing good research.
     
    oceiv likes this.
  7. Kati

    Kati Patient in training

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    But we are 2 weeks post publication! Give Dr Jason (and others) the time to drink his coffee :rolleyes:
     
  8. caledonia

    caledonia

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    I don't know if we can survey just the members or not is the problem. It's something I would have to research. We'll also be able to tell by how donations go.
     
  9. Sasha

    Sasha Fine, thank you

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    By then it will be too late. It's already too late, given that MEAdvocacy's piece just appeared in the Washington Post blog calling for the rejection of the IOM report:

    http://www.washingtonpost.com/news/...ronic-fatigue-syndrome-report-doesnt-help-us/

    Didn't you want to know whether your members wanted to reject the IOM report before you went public with that opinion somewhere as visible as the Washington Post?

    Aren't you concerned that many of your members might be against this and that you may have acted against their interests, as they would see it?
     
  10. snowathlete

    snowathlete

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    If requested, are you going to refund the donations made before you made this important distinction clear? This distinction certaintly was not made clear when you launched and some people may feel quite upset about that.
     
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  11. SOC

    SOC Senior Member

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    :confused: Now I'm really confused by your stance. Is it "this disease" implying we have the same condition but are using different names, or as you say, "ME and CFS/SEID are mutually exclusive."?

    If the two illnesses are mutually exclusive, then research into one does not apply to research into the other. We are no longer in the same funding stream -- donations to research SEID should not be used for ME research and vice versa. We are no longer a team working together to get more research into "this disease" because, according to you, SEID and ME are mutually exclusive diseases. By that argument, MEAdvocacy is not at all representing the general ME/CFS patient population, but instead a group of people with an entirely different disease than the majority of the ME/CFS population as we see it now.

    To add to the confusion, since many people meet both the ICC and the IOM criteria, I can't figure out how the two diseases are mutually exclusive. If they're mutually exclusive, you can't -- by definition -- have both.
     
  12. Sidereal

    Sidereal Senior Member

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    There is no evidence that ME and SEID/CFS are separate and mutually exclusive diseases. We have no idea what ME is, whether it's one or 100 diseases. ICD classifications do not constitute evidence of anything; they're a committee decision not based on science.

    The ICC criteria for myalgic encephalomyelitis have been universally rejected and/or ignored by the wider medical community because they make a number of unsupported or tenuously supported assertions, starting with the inaccurate name. Neurology is never going to accept this name and continuing to insist on it is counterproductive in my opinion.
     
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  13. slayadragon

    slayadragon Senior Member

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    If you believe the name is an "acceptable placeholder," then that would seem to suggest that you do not think it is a bad name and you also do not think it is a good name. Otherwise you would be saying so.

    Therefore, if I were in your position, I would be stating that I thought it was a "so-so" name and then writing in the comments that I thought that it should be adopted anyway.

    Best,

    Lisa Petrison, Ph.D.
    Paradigm Change
     
  14. SOC

    SOC Senior Member

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    I wonder what the future will look like if MEAdvocacy achieves their goal of getting ME recognized as an entirely different, "mutually exclusive" illness from HHS/NIH-accepted SEID?

    What will Lipkin, Klimas, the Lights, Montoya, and all the other top researchers be studying -- SEID with US gov't recognition and funding, or ME with no government recognition or funding? Where will most private patient donations go -- to top researchers using the gov't defined SEID or.... who? It's tough to get published if you don't use an accepted disease definition. How many researchers are going to take that risk? Sure, many might study the more severe group as a subset of SEID, but not if it is insisted that it's not a subset of SEID, but an entirely different disease.

    There seems to be a lot of deliberate metaphorical body damage going on here (shooting selves in the foot, cutting off noses to spite faces).
     
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  15. Nielk

    Nielk

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    Do you think that it is right that the 25% severest have been totally neglected for 30-40 years? No studies, no research, no care? Many have ad enough and have decided to end their lives. I think that time has come to put them at the front of the attention. I want to see studies on them. That is where we are going to find the true biomarkers.
     
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  16. snowathlete

    snowathlete

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    I agree with you, though I think some people don't percieve it like that.

    There seems to have been a misconception created somewhere, that those with true ME as being talked about here, have more severe disease. This is not the case. You can have SEID as proposed by the IOM and absolutely have very severe disease. At least one of the IOM panel has a child with severe disease and yet they seemed happy to suggest SEID. And I am sure that there are researchers who plan to study these severely affected patients with SEID.
     
  17. nandixon

    nandixon Senior Member

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    oceiv, Valentijn, Kati and 3 others like this.
  18. OneWaySurvival

    OneWaySurvival Senior Member

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    I am heartbroken that division is happening among friends and fellow sufferers.

    @Kati , I don't mean to pick on your post, I could have picked from several posts on this thread to show the fracturing that is occurring among us. You make several good points and your thoughts on the best way forward are as much worth considering as the next patient's.

    MEadvocacy.org may have lost your financial support for now or maybe for good, but I encourage you to stay in the discussion to offer your ideas on how we can best do advocacy as a community right now.

    As the article states, I (Tom Jarrett) am one of the patients participating in the MEadvocacy.org Working Group. I have been trying to take in all the various opinions about the IOM report as well as reading the report itself. I found it to be much more serious-sounding and credible than the P2P report (as you would expect with Klimas, Davis, Bateman, etc. compared to a panel of 5 non-experts), and hopefully much good will come from it in way of HHS stepping up to the plate and funding research. Where it gets tricky for me is whether the new SEID definition will continue the dangerous tradition of skewed research, far far away from severe patients, and leading to a dead-end or bottomless pit. Research that is ripe for pollution with a definition that lacks exclusionary terms. And a definition that upsettingly removes pain as a core feature even though a huge majority of patients (98% in one UK study cited) experience pain. What if the IOM report makes it even more difficult in the future for patients who need pain meds for their intractable pain to get prescriptions?

    The above potential pitfalls with the new criteria caused me to want to proceed with caution regarding the IOM report, and the obvious controversy over the name caused me for a time to want to advocate for Ramsay's Disease as a potentially unifying intl. name because it looked as if the IOM report was specifically written in a way that would dismiss or bury M.E. forever by replacing it with SEID, but then it was the interview with Dr. Lucinda Bateman in the ME Global Chronicle (Feb. Issue), after the IOM report release, that clinched it for me that there was another path emerging that could aid advocacy as well as complicate matters.

    In my opinion, MEadvocacy.org's stance is very much compatible with Dr. Bateman's comments, and as one who was on the IOM panel itself, her comments carry much weight:

    Dr. Bateman also said:

    When she says "These issues can and should be sorted out with well designed studies...many of the issues will resolve", that to me is when we will know which of our patient community are considered M.E. patients and which are considered SEID patients (and some will fit both definitions) - but this will not happen with the snap of the fingers. This will take years if not decades to "sort out." So, what is to be done by advocates in the meantime?

    The nearly 20 members of the MEadvocacy.org Working Group and the continuing supporters of MEadvocacy.org are not eager to see the disease M.E. walked away from by the U.S. government. If we all go lock-step along with the new SEID criteria, and support only those endeavors of the US government, it is a very real and deep concern that severe, bedridden M.E. patients along with moderate housebound patients that spend many hours laying in bed writhing in pain, will remain that way because SEID arguably does not take them into account, and the words of the 9 severe patients who wrote to the IOM in December, already ignored, will soon be forgotten.

    It will take the cooperation and collaboration of many advocates with many different views to make sure that every patient diagnosed with M.E. and/or SEID gets the help they need.

    This is a confusing time, post-IOM report, and I have yet to see any group or person that can say they "represent the views of all ME patients" - the IOM report blew up our patient community and we are still picking up the pieces. I think it is an unfair expectation for any advocate group right now to adequately represent the view of all ME and/or SEID patients. The new issues/problems/challenges/opportunities generated by the IOM are too complex for any one group to address all issues. That is why I agree with Caledonia's point about needing multiple advocacy approaches (a variety of protesting and collaboration will be required in this new era) to get patient needs seen by the public, funded by the government, researched by scientists, and treated by doctors.

    Please be patient with MEadvocacy.org (as one of several groups advocating for patients) and let's give them a chance to formulate strategies, and readjust as necessary as new information is revealed by our doctors and researchers (remember that the P2P revised report is still due which could be another can of worms) in order to generate more research, a more accurate case definition, and public awareness for those suffering with this disease(s?).

    It is actually possible for a patient advocate to support MEadvocacy.org and also want good to come from the IOM report. I would encourage people to give MEadvocacy.org a chance and I would encourage MEadvocacy to listen to all patients' points of view.

    My family is going to move forward with the KnoW M.E. Challenge. Christine and I also had a planning meeting today with a very talented local musician who has agreed to do a benefit concert for M.E. That will happen sometime this spring, hopefully leading up to the International M.E. awareness day on May 12.

    Donations from that campaign and the benefit concert are going to both MEadvocacy.org as well as the End ME/CFS project through the Open Medicine Foundation. These groups may have a different take on the IOM report as it stands right now, but if we keep our eyes on advocating for solid, biomedical research of well-defined cohorts, then we may have more in common than what we are allowing ourselves to see right now.
     
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  19. beaker

    beaker ME/cfs 1986

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    Me too. Now I wish I had not donated. I don't like how my money is being spent.
    Show me a criteria that someone has come up with and I meet it. I also was for the ME before we know what the IOM was going to be. I don't like the SEID name, but I'm not about to throw the proverbial baby out with the bathwater.
    Screw the name wars. I was dx'd in US during cluster outbreaks of 80's. CFS was all we have had officially in US.
    Yes, that I wanted change. But all this division now ? NO.
    I would like to promote research. Then the name issue becomes moot.
     
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  20. nandixon

    nandixon Senior Member

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    You're confusing things here. The "CFS" of the ICD-10-CM does not require PEM (and is therefore not true CFS). But SEID does now require PEM, just like ME.

    Therefore, SEID and ME are not mutually exclusive.

    That would be like saying that the multiple sclerosis patients who have more symptoms than average, or more severe symptoms than average, have multiple sclerosis, but that the less affected MS patients do not. It doesn't make any sense.
     
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