Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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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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    What @SOC said.

    I suspect ME Advocacy has recruited people who think alike, so the decisions that were made were greatly polarized into what that particular group was thinking.

    You can not generalize and say this is what the entire community thinks about the IOM report.

    Also (I believe I said that before) you cannot change your course of what the campaign is aimed at in the middle of canvassing funds for the campaign.

    The Washington Post article was a total failure, disregarding who is the audience, what was the exact purpose and why posting now.

    It's unfortunate because it makes your media company and us the patients look really bad.
     
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  2. SOC

    SOC Senior Member

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    I agree whole-heartedly. I applaud Tom's courage and willingness to listen to other viewpoints under the current circumstances.
     
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  3. SOC

    SOC Senior Member

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    For me it was particularly problematic that it was put in the Washington Post for all the politicos to read. These are the people who are going to make all the difference in whether we get political support for research funding and medical education programs. These are the last people we need to look bad in front of. We're trying to convince them that we are worth helping, not the selfish, ungrateful whiners they've been told for decades that we are.
     
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  4. eafw

    eafw Senior Member

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    I am one of the 25%, and am getting on for 25 years of neglect with this condition - classic Ramsay/neuroimmune ME, lots of neuro and sensory symptoms, some barely touched on in the report.

    But these are not grounds for rejection.

    The IOM report is what it is - a survey of the state of play *at the moment*. What is achieved by objecting to it ? They are not the villains here at all. It is the governments who have failed to provide funding and Drs who have failed us, they have had the ICC and CCC for years but chose not to use them.

    This IOM report is good ammunition, good leverage. A good advocacy org would recognise it as such and strategise ways to use it, not ways to remove and destroy the best political step forward we've had in a long time !!

    In addition, I am not so precious as to demand that the name of the disease revolves only on my symptoms either. I can recognise that I am a subset of a bigger picture, SEID has room for variation and is a potential stepping stone for future research, and then on to subgoupings, diagnostics etc. Again how does it help to reject this and in a way (as others in this thread have covered) that badly misrepresents many of us with the condition ?

    No, neglected patients are neglected because of the attitude of the medics, social services and so on, not the IOM report. Where is your reasoning that it is the IOM report that will fail the severe sufferers, as opposed to the medical profession and government research funders for instance ? (this is not a rhetorical question)

    You are going after the completely wrong target. You want to advocate, then stop and think about how to do it properly instead of lashing out and leaving the rest of us with all the collateral damage to deal with.
     
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  5. snowathlete

    snowathlete

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    Thanks again, for talking.

    I said in another post, that I don't think the goals statement that Nielk quoted made it clear enough that you were talking about ME as opposed to CFS (using the terms in use at the time ME Advocacy org published it) but at the same time I can accept that there was no intent to mislead. Thanks for saying you'll discuss the wording with your group and there is a lesson for me too, to be more cautious who I support and ask more questions.


    "MEadvocacy.org is a patient-run advocacy group, but does not speak for all patients."
    Regarding this statment, I realise it is just a first draft statment you have put here - I think you are on the right track, but you'll need to spend some more time on it to come up with a better variation, as I agree with you that in its current form, that statement is highly likely to get amended by editors.

    I get what you're saying that people at ME Advocacy org don't all neccesarily have a black and white view on the report being negative, but my point is that if you come out against it, then you alienate everyone who is not against it. As you point out there are people for it, but there are also people who would accept with changes. If these people are faced with the reality of either rejecting or accepting it, then first, they likely don't feel that comfortable with either, so having either decided for them is going to go down badly with them. Frankly, taking a reject or accept stance as an advocacy group, given that landscape, is bad idea and likely to just cause more division and upset in the community.

    As an outsider, the impression of your group, from your own site and the article in the WP is that you are totally against the IOM report, 100% committed to trying to bury it and I get the impression you'd do that, if you could, at any cost (even if that meant we ended up back with CFS and Fukuda. That impression, correct or not, is a big concern for me at the moment. Saying things like "a disastrously loose definition, just like the 1994 Fukuda-CFS criteria." is really just catastrophising. You might argue that it is loose (though I dont think there is evidence enough to know at this stage) but to say it is as loose as Fukuda? Come off it. Do you really stand 100% behind that statement? Reading these things (and there are several other remarks like that) it seems clear to me, as a reader, that the writer at least holds the view that the IOM report should be outright rejected - they see it as the enemy. It is a very strong, one sided view that is being expressed. So whereas you tell me that the view isn't quite so one-sided in your group, the stuff you publish doesn't reflect that. So then I have to ask myself, Can I trust that as a group you have enough control and are taking enough care in what you're saying? If not, then whatever views you have within the group, and wider in your membership, how can I know if that will translate into the official message accurately?

    The stuff that's been published by ME Advocacy org recently leaves me very turned off - and not just because I don't agree with it, but because of the type of language being used, because I dont think some of it helps anyone. It has me concerned, and honestly, I'm doubtful that I could offer my support again even if you focused on more agreeable areas like campaigning for funding, but maybe in time you can do enough to show me that ME Ad org would handle it well.

    Not all that will be easy to read, I guess. I don't like writing a lot like this and not reading it over, sorry if some of it's a bit raw, but I'm just being open with how I feel about it and I'm too exhausted today to take more time thinking it over more. I do appreciate you having talked with me about it.
     
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  6. snowathlete

    snowathlete

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    Thanks for asking.
    Quick answers.
    1. Not neccesarily, no. I dislike polls anyway because they are open to all kinds of bias, not all of it down to the people running the poll! But informal communication is also highly likely to result in bias. Again, not necessarily under your control. However you decide to canvass opinon from the community, I think any organization that represents other people must work actively to guard against the opinions of people at the core of the organization from taking prescedence over them, or at least skewing the reality of opinion in the broader community. That is very hard to do, particulalry if you batt on topics where opinions are divided, but that is where it is more important. Ultimately, as with all things in life, it is actions that matter. Once you have acted, that's it, you can't take it back, amend it, have the benefit of hindsight, etc..
    2.Of course, that would have been better. It's a more sensible ending, more reasonable and comes across as more professional to readers outside the ME world too. And the end is important, but so is the rest of the text. The worst part of the article, in my opinion was the remark about the name being problematic because it gives the impression we are lazy. I don't agree with that, but even if I did I would absolutely not like that being said because it is counterproductive. All that remark has done is given credibility to those who promote that view - by remarking on it you have actually validated it as a viewpoint to the reader. You should not focus on what the enemy are saying but on your own narrative. You have to focus on the things being said fulfilling specific purposes, and be especially warry of things that might actually cause damage as this is not a remark on a Facebook say, but to a wider audience, meaning damage is multiplied.
     
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  7. Sean

    Sean Senior Member

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    I think such characterisations are simply wrong, and do not serve our interests.
     
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  8. jimells

    jimells Senior Member

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    @OneWaySurvival the WaPo essay is most unfortunate. If your PR firm reviewed it and didn't object, they should be fired. The first job of any consultant (regardless of the field) is to protect the client from their own mistakes. They are supposed to be the experts, not you. On this they have failed completely.

    On the other hand, I'm guessing the damage will be minimal, because few readers would've read beyond a few paragraphs - this stuff is just too arcane. No one outside our community cares about this naming and definition business, even if they can understand it - why would they?

    I keep getting this image of HHS poking an ant hill with a stick, then sitting back to watch the ants run around in circles trying to put the nest back together. Meanwhile they will continue to not fund the illness, whether the new name and definition is adopted or not. HHS will have to appoint more committees and commission more reports on whether to adopt the IOM recommendations. And don't forget the P2P report says the definition needs to be hammered out before doing any research, so they have all these convenient built-in excuses to delay funding additional research until all these political issues are resolved.

    I remember @Jonathan Edwards wrote a while back that he wasn't too hung up on defining RA while researching it. My impression is that he was more interested in studying the illness than he was in studying the definition.

    Regardless of the audience, the message has to be pretty simple if you want people to understand and remember it. I like to sum it up with one simple question:

    Why won't NIH fund biomedical research for this illness, whatever it is?

    I hope this will be front-and-center in any discussions with Congresscritters.
     
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  9. caledonia

    caledonia

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    Thank you for sharing your concerns and ideas about MEadvocacy.org. I would like to clarify my comment about ME and CFS/SEID being mutually exclusive, as that may have come across as divisive. I only meant that ME & CFS are coded in a mutually exclusive way in the ICD-10 book of disease classifications, but @Kati is correct in pointing out that in the real world, not even the doctors and scientists know yet how the patients will be stratified within the ME & SEID frameworks, and there may be significant overlap of patients meeting both definitions.

    There is likely to be confusion as well as strong and diverse opinions for a long time in the wake of the IOM report. However, the IOM report is not the only focus of MEadvocacy.org.

    There are more important and unifying issues for which to advocate, including the call for dramatically increased funding into biomedical research into the most severe, bedbound patients.

    MEadvocacy.org will not lose sight of this important goal, even as we seek to gain clarity about the IOM report and it's ramifications on this entire patient population. Please be on the lookout for a new blog post where we clarify MEadvocacy.org's positions on several issues, all with the aim of improving the lives of M.E. patients around the world.
     
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  10. Sasha

    Sasha Fine, thank you

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    Thank you, @caledonia. I'm glad that MEAd will be focusing on other issues as well but I hope your committee will bear in mind that if MEAd continues to call for the rejection of the IOM report, it will not get the support of patients who want this important report accepted and acted upon: and so these other important issues around funding won't get the support they need.

    Thank you for listening and taking the time to reflect. I hope a constructive way forward can be found.
     
  11. Kati

    Kati Patient in training

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    i am also curious to know if the chosen candidate for media interview will be free to say anything they want, not just what MEAd wants them to say.
     
    Last edited: Mar 4, 2015
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  12. Ember

    Ember Senior Member

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    Dr. Jason (March 4th) comments:
    He concludes that “an alternative vision is still possible.”
     
    Last edited: Mar 6, 2015
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  13. Nielk

    Nielk

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  14. Kati

    Kati Patient in training

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    Not fundingME Advocacy. As far as I know they could turn around and do something completely different than what they say tomorrow as they did in the past. MESEID Advocacy needs to stop reacting and start working on a real comprehensive Advocacy plan and campaign that makes sense for all.
     
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  15. Nielk

    Nielk

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    Clearly you have not read the blog above. I respect your choice not to support MEadvocacy.org but, they have never waivered from their stand.

     
  16. deboruth

    deboruth

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    Excuse me. I just want to insert one small pedagogical note about the issue of using the "ME." In actual fact, the outbreak that brought attention to this disease in the US was that of several hundred people in Incline Village Nevada (Lake Tahoe) starting in the winter of 1984-85. That outbreak was what caused Drs. Peterson and Cheney to call the CDC. That outbreak was documented by international experts such as Dr. Hyde as being Myalgic Encephalomyelitis, as per the neurological disease recognized by the WHO at 93.3. Later, in 1988, the CDC re-christened the disease experienced by the people at Incline and called it Chronic Fatigue Syndrome, chiefly to make it seem less serious. As Tahoe is a resort living wholly off of tourism and real estate it was going to go bankrupt if people thought the disease there was serious. This would also have somewhat depressed much of Northern Nevada, including Reno and Carson City. If this documentation hasn't put you to sleep yet, let me conclude by saying that CFS was invented by CDC as a new name for ME. This was very rude of the CDC, to ignore the international standard and impose a new American name, but I guess they thought the economy of Northern Nevada was more important than good international manners. Therefore, CFS = ME. Whatever extensions of "CFS" meaning have been done since 1988 -- mainly through the lack of specificity in Fukuda 1994 -- were just that; extensions. In the original re-Christening CFS was assigned to represent an outbreak of ME at Incline Village, Nevada, in the winter of 1984-85.
     
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