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MEAdvocacy.org Update and a Call for Continued Support

Gabby Klein reports on news and updates from MEadvocacy.org … 

I have tried raising money by asking for it, and by not asking for it. I always got more by asking for it.”- Millard Full

wendy-ME-Advocacy-a

ME Advocacy has been very busy implementing new projects and are seeking your continued support for their upcoming projects.

Thank you for your support of MEadvocacy.org. Because of your efforts, they have been able to get their PR project off the ground and have been busy implementing a wide range of projects outlined below.

We have seen in the past couple of weeks with the IOM roll out and subsequent media blitz just how important our image in the media is.

Some of the comments on articles have been extremely disturbing.  We need to combat this negative slant about our disease.  Please take the time to read the updates and continue your generous support for the next month’s projects.

Here is an update on the work of our PR firm from Crowds On Demand CEO, Adam Swart:

Goal #1: Press Coverage 

We have contacted dozens of heath reporters regarding the IOM meeting. We are currently pitching these outlets in regards to writing a human interest story discussing patients’ experiences, why the new name is problematic and why despite the fact that the IOM meeting was a good first step, adjustments are needed for it to become accepted by both the patient and medical communities.

Goal #2: Presence at Key Events

Picketers were present at the Opening Day of the new Congress in January. Moreover, we had a spokesperson speak on our behalf and deliver remarks and questions at the IOM Meeting on February 10th, 2015. A photograph of Wendy, our spokesperson, entering the meeting is at the top of this article. As well, you can see her ask two of our questions at about 47 minutes into the IOM meeting video.

Goal #3: Lobbying Efforts

We are planning a Day of Action in mid-March to capitalize on the IOM report which will include demonstrators around the Capitol office buildings and lobby visits with members of Congress.

Goal #4: Increased Awareness

The media coverage we received is complemented by radio ads running in markets across the United States highlighting the severity of the condition and the need for a comprehensive solution. In the aftermath of the IOM report, these ads will focus more on the need to research a cure, and for more substantive action on the issue.

Goal #5: Going-Forward List of Patient Demands

We are putting together a list of five demands for dealing with the disease going forward again capitalizing on the IOM Report. Those include among others, substantial funding to research a cure. This list of demands will be widely circulated to members of the media and posted on strategic blogs.
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We are fundraising as we go along, so if you want this campaign to continue past February, we need your donations now! Our goal is an additional $4100 for a total of $15,000 on the leaderboard by February 27, 2015.

 Please donate to MEadvocacy.org here.

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{ 75 comments… add one }

  • Sean February 26, 2015, 12:37 am

    I think it is a serious mistake to completely reject the IOM report.

    It is one thing to constructively criticise any significant shortcomings in this report and ask that they be improved (and suggest how to do so). But to completely reject the report is counter-productive. By any standard this a solid science based document, that could work well to our advantage.

    This report is a stepping stone, not the final destination. Its purpose is to break the gridlock and allow things to move forward, and as such it is as much a political document as a scientific one. And there is nothing wrong with that. It is the political front where we have been losing, not the scientific or moral ones, and it is the political front where we needed an opening. The IOM report has given us that (hopefully in conjunction with the final P2P report, due soon).

    The most important thing we needed from these two reports, besides basic recognition of the problem, was a major reorientation away from psychosocial and toward biophysical research, and the IOM has done that, and the P2P seems likely to, far as I can tell.

    Things are starting to change rapidly in this field of medicine, and the prizes go to those who can ride the wave of change.

  • Sasha February 26, 2015, 1:46 am
    OneWaySurvival

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

    Hi Tom! Same here.

    I (Tom Jarrett) am one of the patients participating in the MEadvocacy.org Working Group. […] 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. […]
    Please be patient with MEadvocacy.org (as one of several groups advocating for patients) and let's give them a chance to formulate strategies,

    Thanks for making such a kind post, Tom. It has been paining me to have to raise questions about what one of our advocacy groups is doing and I hope it's clear that I'm doing it partly in the hope that MEAdvocacy.org will develop in a good way. What I'm seeing at the moment raises a lot of questions for me.

    I've mentioned my concerns about MEAd's (saving myself some typing there) failure to survey its own membership for its views since the report came out but I've been thinking about this overnight and my main concern is that MEAd may well be a small faction with a megaphone that has managed to get into mainstream media with a message that most patients would see as being against their interests.

    When MEAd started out, it did so on what might well have been a majority platform – opposing the IOM process – in anticipation that we were going to get a terrible report. If things had been as many expected, I think you'd have the backing now of most of the community.

    Instead, the report has surprised and pleased many – possibly most – patients. It's my belief that MEAd now finds itself representing the views of a minority faction but hasn't thought through whether it's right to go public and act against what the majority of patients see as their interests.

    I think that's a serious problem for MEAd and for all of us.

    You ask people to be patient with MEAd but in the meantime, MEAd is rushing ahead to grab airtime for its views. I'd like to see MEAd doing some serious thinking about how the landscape has changed and how it's likely to play out for our whole community if it pursues this line.

    I can see from your posts that you're listening, Tom, and I'm glad that you'll take the views on this thread back to the committee. I hope that a bunker mentality isn't developing, which would be a very easy thing to happen when people feel beleaguered by criticism.

    Thanks again for your posts.

  • DanME February 26, 2015, 3:50 am

    Hi,

    I just have to say, that I feel disappointed and think the rejection of the IOM report is serious mistake.

    Before the IOM report was published I was quite scepitical about the outcome and ready for the worst. But the worst didn't happen. Quite to the contrary, I think most of the IOM report is excellent and a huge step forward. You can already see, how we are able to give the psych lobby a hard time with statements from the IOM report.

    So when I donated to the MEAdvocay, I didn't think, they would feel the need to lobby against the IOM report under all circumstances. Also I think, the Washington Post Article gave the impression that the majority of patients is against the new name and the report, which is just not true, it would have been much better, if it had specifically stated that the MEAdvocacy Group is against the new report.

    I am sorry, but I won't continue my support.

  • OneWaySurvival February 26, 2015, 9:21 am

    Question for those who felt betrayed, misled or unhappy with either MEAd or the stance it took in the WP article:

    Would it change how you feel about it if:
    1) A careful polling of donors/members/broader community about potential responses to the IOM report, rather than informal communications and observations on the part of a group of advocates had gone into the decision to stick to it's original pre-IOM goals?
    2) Here is how the article concluded: "We at MEAdvocacy.org call for rejection of the IOM report." Would it change how you feel about it if it ended with "MEAdvocacy.org rejects the IOM report in it's current form."

    Thanks for your comments.

  • Aidan Walsh February 26, 2015, 10:22 am

    Perfect name for this illness 'Chronic Internal Ionisation Radiation Injuries Disease(s)' more than one Radiation Isotopes involved here with 'broken cromosones/translocations' all 15 patients of a Cohort are urine Positives thanks to Gail Kansky's team…This is not a viral or bacterial illness it is Radiation Sickness which explains the total neglect & decades of cover ups I don't have CFS nor M.E. nor so called Lyme I refuse to be 'labelled' by anyone & now refuse their new name how could they ever say Disease if the causes(s) have not been replicated the Russians call this Chronic Radiation Disease…Thyroid issues as a result of these Isotopes…Want a Cure publish the truth once & for all…

  • Sasha February 26, 2015, 10:40 am
    OneWaySurvival

    Question for those who felt betrayed, misled or unhappy with either MEAd or the stance it took in the WP article:

    Hi again Tom, and thanks for taking the concerns being raised here seriously. An advocacy group that represents the majority of patients could be a huge asset and it's a pity that MEAd is having to find its feet at such a difficult and divisive time.

    Would it change how you feel about it if:
    1) A careful polling of donors/members/broader community about potential responses to the IOM report, rather than informal communications and observations on the part of a group of advocates had gone into the decision to stick to it's original pre-IOM goals?

    Short answer, yes! I think you need to be polling your members since they're paying your bills but as I said above, my concern at the moment is that the wish to reject the IOM report may be the view of a minority faction of the patient-community overall. So if you push that view in the media, I'd question whether that's the right thing to do and I'd expect you to get a lot of very public pushback from other patients who disagree with you. A divided voice is no voice and that's in nobody's interests.

    The devil would be in the detail, though. You'd need a bunch of response options that everyone could agree are phrased fairly and that cover the full range of options that anyone might want. I don't think you could draw up those questions on your own, because all of us are blind to our own biases to at least some degree: I think you would need help from people with different views from your own (I hope you would get that help here, for instance).

    It would also be crucial to disseminate the poll widely – including on Phoenix Rising, via Co-Cure and all the usual main channels to reach patients. I wish I knew how representative a sample of patients that would be. My worry would be that an established online community appears to have formed around the ME/ICC issue who could quickly mobilise to flood a poll and influence the results out of all proportion. I wonder what others think of this.

    2) Here is how the article concluded: "We at MEAdvocacy.org call for rejection of the IOM report." Would it change how you feel about it if it ended with "MEAdvocacy.org rejects the IOM report in it's current form."

    That wouldn't change things for me. I think the report should be welcomed with improvements suggested rather than rejected with improvements suggested.

    This whole issue raises a lot of interesting issues about how an adocacy organisation should operate in such a long-traumatised and divided community.

    I posted recently about the maximum-consensus technique (used in controversial areas where action is needed). What you do is identify the things on which you do agree. That's your maximum possible consensus, and you use it to take productive action based on that consensus. You don't try to increase the consensus, and that's a crucial point. You identify it, and act on it.

    I think we could all agree that we want to push for more biomedical funding, for instance: perhaps at the moment that's our maximum consensus. Perhaps that's something that MEAd could push for in the media and that all patients could get behind.

    I'd like to know what others think but in the meantime, thanks again, Tom.

  • ballard February 26, 2015, 10:41 am

    I made the mistake of donating money to ME Advocacy, and I'm afraid that I am now being counted as one of your 800 supporters. I would like to make it clear that I no longer support your activities.

    The unfortunate Washington Post article was the tipping point for me.

    The IOM report has the potential to move us forward. I urge you to support it.

  • SOC February 26, 2015, 11:34 am

    I appreciate that you are trying to address the concerns expressed here, Tom. I think that's critical for an advocacy group trying to represent all, or at least the vast majority, of patients.

    @Sasha covered most of the important points, so count me as in agreement with her post above, with a few extra points added.

    OneWaySurvival

    Would it change how you feel about it if:
    1) A careful polling of donors/members/broader community about potential responses to the IOM report, rather than informal communications and observations on the part of a group of advocates had gone into the decision to stick to it's original pre-IOM goals?

    I have serious reservations about any kind of non-scientific, online poll. It's impossible to construct one that doesn't contain bias of some form. It could be in the way the questions are phrased — intentionally or not. It's extremely difficult to construct an unbiased question set when you have an opinion on the matter yourself. Bias also arises in where the poll is advertised. It's likely the majority of patients are not active on even the main few internet forums, so an online poll may never get to the attention of the majority of patients.

    Finally, and probably the worst problem, is selection bias. Online polls do not have randomized selection of participants. The answers are naturally skewed by the fact that people who feel the strongest are the most likely to participate in the poll. It would be far too easy for any group with a strong bias in one direction to flood the poll. It can make a minority opinion look like a majority opinion. You'd have no idea what your data actually means — do more people approve of the IOM report, or did more people who approve of the report feel strongly enough about it to go to your poll and answer it?

    Frankly, I don't know how you can figure out what the majority opinion is on this matter, barring contracting a knowledgeable, unbiased, scientific organization to construct a true scientific poll — which would be prohibitively expensive.

    2) Here is how the article concluded: "We at MEAdvocacy.org call for rejection of the IOM report." Would it change how you feel about it if it ended with "MEAdvocacy.org rejects the IOM report in it's current form."

    No, that wouldn't help at all. Rejection of the IOM report is not acceptable. It leaves us with Fukuda and CFS, which is worse by any standard. I could accept the position that there are many points for discussion and improvement in the IOM report.

    I think MEAdvocacy needs to accept that many patients (and former donors) feel betrayed by the WP article. Betrayal involves a loss of trust. That isn't repaired overnight, or by simple apologies (not suggesting you should do that, just making the point), or by statements like "We'll be different in the future". Trust returns when you prove, through your actions over an extended period of time, that trust in you is again warranted. In the meantime, you have to accept the consequences of that lost trust and continue to move forward as best you can.

    If MEAdvocacy really wants to represent the patient population in general, then Sasha's maximum consensus plan sounds like the wisest path. Give up on fighting issues that are controversial within the patient population and stick to positions that we can all agree on, like substantially increasing funding for biomedical research.

    That isn't to say that MEAdvocacy should try to represent the patient population overall. It is perfectly reasonable, imo, to represent some subset of the population. But if you do so, it is critically important that you make clear to everyone that you do NOT represent all patients and that the subgroup you do represent has very different views on the topics in question than significant other segments of the population.

  • Sasha February 26, 2015, 12:01 pm

    I've got to admit that even though I was the one advocating that MEAd should canvas the opinion of the community, I can't think of a way of doing it, with the resources that we have, to produce a poll whose answers we can trust. That's disappointing. I agree with @SOC about the various biases (not least of which is our inability to reach the vast majority of patients who don't hang out in our forums or on the various FB pages).

    If I were MEAd and wanted to do something that wouldn't have my own community fighting against me, I'd go for the funding issue.

    Anyway, those are my thoughts at the moment and I hope others will weigh in.

    It's great that Tom is here listening and trying to address the issues. It must be hard for MEAd to hear criticism when they were expecting support and it takes courage to enter into constructive debate at such a time.

  • Kati February 26, 2015, 12:12 pm
    SOC

    I appreciate that you are trying to address the concerns expressed here, Tom. I think that's critical for an advocacy group trying to represent all, or at least the vast majority, of patients.

    @Sasha covered most of the important points, so count me as in agreement with her post above, with a few extra points added.

    I have serious reservations about any kind of non-scientific, online poll. It's impossible to construct one that doesn't contain bias of some form. It could be in the way the questions are phrased — intentionally or not. It's extremely difficult to construct an unbiased question set when you have an opinion on the matter yourself. Bias also arises in where the poll is advertised. It's likely the majority of patients are not active on even the main few internet forums, so an online poll may never get to the attention of the majority of patients.

    Finally, and probably the worst problem, is selection bias. Online polls do not have randomized selection of participants. The answers are naturally skewed by the fact that people who feel the strongest are the most likely to participate in the poll. It would be far too easy for any group with a strong bias in one direction to flood the poll. It can make a minority opinion look like a majority opinion. You'd have no idea what your data actually means — do more people approve of the IOM report, or did more people who approve of the report feel strongly enough about it to go to your poll and answer it?

    Frankly, I don't know how you can figure out what the majority opinion is on this matter, barring contracting a knowledgeable, unbiased, scientific organization to construct a true scientific poll — which would be prohibitively expensive.

    No, that wouldn't help at all. Rejection of the IOM report is not acceptable. It leaves us with Fukuda and CFS, which is worse by any standard. I could accept the position that there are many points for discussion and improvement in the IOM report.

    I think MEAdvocacy needs to accept that many patients (and former donors) feel betrayed by the WP article. Betrayal involves a loss of trust. That isn't repaired overnight, or by simple apologies (not suggesting you should do that, just making the point), or by statements like "We'll be different in the future". Trust returns when you prove, through your actions over an extended period of time, that trust in you is again warranted. In the meantime, you have to accept the consequences of that lost trust and continue to move forward as best you can.

    If MEAdvocacy really wants to represent the patient population in general, then Sasha's maximum consensus plan sounds like the wisest path. Give up on fighting issues that are controversial within the patient population and stick to positions that we can all agree on, like substantially increasing funding for biomedical research.

    That isn't to say that MEAdvocacy should try to represent the patient population overall. It is perfectly reasonable, imo, to represent some subset of the population. But if you do so, it is critically important that you make clear to everyone that you do NOT represent all patients and that the subgroup you do represent has very different views on the topics in question than significant other segments of the population.

    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.

  • SOC February 26, 2015, 12:44 pm
    Sasha

    It's great that Tom is here listening and trying to address the issues. It must be hard for MEAd to hear criticism when they were expecting support and it takes courage to enter into constructive debate at such a time.

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

  • SOC February 26, 2015, 12:50 pm
    Kati

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

    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.

  • eafw February 26, 2015, 1:19 pm
    Nielk

    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?

    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 ?

    OneWaySurvival

    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

    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.

  • snowathlete February 26, 2015, 2:28 pm
    OneWaySurvival

    It was good to hear more about how you felt misled by MEadvocacy.org, @snowathlete and where you feel friction is developing with the advocacy group and patients it hopes to represent. I will take your points back to the Working Group because I agree we need to be very clear and qualify statements that we only represent some patients' views, for example.

    Looking at your list, starting with #1, I hope that Nielk posting the original MEadvocacy.org mission statement/goals can at least partially address your concern that we are attempting to follow through on the goals that have been written since the project launched. But, because the IOM report has divided advocates into two or three main camps (accept, reject, or accept with changes), it was inevitable that some patients & donors to MEadvocacy.org would get alienated simply by the group taking any sort of stance on the report.

    To illustrate this point, I'll tell you how on one of our blog articles, we had said "although the IOM report was a good first step, changes are necessary for it to be widely accepted by both the medical and patient communities" and we got ripped on the comments with people saying the IOM report was not a good first step and how we promised our donors that we would use the money to oppose the report. Of course, you've seen the other side where opposing the report is also upsetting donors. But maybe a better course of action would have been to go back to the donors first (as many as would respond) and take a poll on how they think we should respond to the IOM report: Accept, Reject, or Accept only if certain changes are made.

    #2 on your list. I agree 100%. This needs to be more clear in any future press. We need to qualify who we are with a statement something like "MEadvocacy.org is a patient-run advocacy group, but does not speak for all patients." (whether the editor keeps such a long qualifying line may be out of our control, but we should at least try)

    This is not what the people at MEadvocacy.org think. I think most committee members for instance think there are positives in the report. But because there is not a process for revisions being offered, a decision had to be made to either write a dissenting opinion piece (something which had not yet appeared anywhere in the numerous press about the IOM report, giving the misleading idea that everyone is on board with the report as-is), or to write a piece that accepts the IOM report as the new name/definition to replace M.E, or maybe a 3rd option would be to ask for changes even though no process for changes has been offered.

    I also agree with you and @Kati that the most productive strategy going forward may be to turn our focus to Funding. As you said, that is something all patients can agree on. Maybe more articles can be submitted in the future which quote Dr. Jose Montoya from the Feb. 23rd PCOCA call (on Monday) with CDC's Beth Unger. It was difficult to hear on the garbled phone so this is a paraphrase, but I believe he said that "with an annual research budget of $100MM, ME/CFS could be solved in our lifetimes." Now that would be something to celebrate!

    Thanks for your thoughts @snowathlete . I will do my best to consider a variety of patient views when I offer my 2 cents to questions being asked in the MEadvocacy.org Working Group and will think about ways to improve on the process of getting the input of additional patients as the National PR Campaign for ME continues.

    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.

  • snowathlete February 26, 2015, 3:18 pm
    OneWaySurvival

    Question for those who felt betrayed, misled or unhappy with either MEAd or the stance it took in the WP article:

    Would it change how you feel about it if:
    1) A careful polling of donors/members/broader community about potential responses to the IOM report, rather than informal communications and observations on the part of a group of advocates had gone into the decision to stick to it's original pre-IOM goals?
    2) Here is how the article concluded: "We at MEAdvocacy.org call for rejection of the IOM report." Would it change how you feel about it if it ended with "MEAdvocacy.org rejects the IOM report in it's current form."

    Thanks for your comments.

    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.

  • Sean February 26, 2015, 7:04 pm

    "a disastrously loose definition,"

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

  • jimells February 28, 2015, 10:09 am

    @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.

  • caledonia March 2, 2015, 5:54 pm

    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.

  • Sasha March 3, 2015, 1:19 am

    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.

  • Kati March 3, 2015, 1:24 am

    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.

  • Ember March 6, 2015, 6:47 pm
    Kati

    Arguing about ME VS CFS VS SEID is pointless waste of time and money.

    Kati

    We are 2 weeks post publication! Give Dr Jason (and others) the time to drink his coffee :rolleyes:[​IMG]

    Dr. Jason (March 4th) comments:

    Empirical methods could have been employed to test the proposed classification system…. It was also a mistake to apply identical diagnostic criteria to both children and adults. Finally, there is a clear need to exclude those who have a primary affective psychiatric disorder, as including these patients in the case definition would confound the interpretation of epidemiologic and treatment studies, and complicate efforts to identify biological markers for this illness….

    There has been considerable discussion among patient groups regarding prominent differences among patients. There is a need for studies to determine whether distinct categories or continuous measures best capture these differences.

    He concludes that “an alternative vision is still possible.”

  • Nielk March 18, 2015, 6:00 am
  • Kati March 18, 2015, 9:47 am

    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.

  • Nielk March 18, 2015, 10:00 am
    Kati

    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.

    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.

    MEadvocacy.org was formed last year with the purpose of promoting and supporting advocacy efforts for the disease Myalgic Encephalomyelitis (ME). At its inception, organizational goals and certain campaigns were outlined, chosen and adopted.

    Goals

    • Challenging the three government redefinition projects for "ME/CFS": the Institute of Medicine (IOM) report, the Pathways 2 Prevention (P2P) report and the Center for Disease Control (CDC) Multisite Study.
    • Getting Myalgic Encephalomyelitis (ME) officially recognized by the US government as its own disease. ME has a 60-year history and has been classified as a neurological disease in the World Health Organization's International Classification of Diseases since 1969.
    • Getting a single, clear definition for diagnosis and research, which includes the hallmark symptom of post-exertional relapse, adopted as the official definition for ME. An example is the Canadian Consensus Criteria (CCC) or the International Consensus Criteria (ICC) which have been authored by a majority of our ME experts, clinicians, and researchers. ME experts must be used in decision-making as the current “CFS” literature provides a misleading picture of the disease.
    • Getting government funding to study this devastating disease, similar to the amounts being spent on diseases such as Multiple Sclerosis, Autism, Lupus, Crohn’s Disease, Inflammatory Bowel Disease, Parkinson’s Disease and Alzheimer’s Disease.

    MEadvocacy.org was set up in support of the name Myalgic Encephalomyelitis (ME) and the use of the expert authored CCC or ICC.
    MEadvocacy.org challenged the U.S. government-sponsored IOM, P2P and the CDC multi-site processes. We opposed the spending of one million dollars of our tax-paying money in a process to redefine, rename and rebrand the disease when good criteria created by international experts and a historical name already existed. We opposed the lack of government transparency as well as the poor stakeholders’ participation in these processes.

    Campaigns
    In January of 2015, thanks to the community’s support of a successful funding campaign, MEadvocacy.org successfully hired the P.R. firm Crowds on Demand. The P.R. firm has been busy initiating various projects such as arranging for radio interviews, facilitating media contacts, and providing representation at the Congressional Inauguration.

    The P.R. firm had a spokesperson speak on our behalf and deliver questions at the IOM Meeting on February 10th, 2015.

    The IOM Report
    The IOM report was “rolled out” on February 10th and was followed by a deluge of media coverage organized by the IOM. The report was made available in advance to Health and Human Services (HHS) and members of the media. ME stakeholders, clinicians, researchers, patients and advocates were kept in the dark until the official reveal.

    The advocates who advise MEadvocacy.org reviewed the IOM report, the diagnostic criteria and the new name, Systemic Exertion Intolerance Disease (SEID). We compared the results with our stated mission and came to the conclusion that the criteria and name did not meet up with our original goals.

    The Criteria:
    The IOM criteria are overly broad and lack essential exclusions.

    • The lack of exclusions will result in the inclusion of active (untreated) psychiatric-induced fatigue or other fatigue conditions.
    • The criteria are too simplistic to properly capture the scope of ME, which is a complex, multi-system disease.
    • The stress on fatigue, as the first/main symptom of the disease, gives the wrong connotation that it is just a “fatiguing” illness.
    • The symptoms overlap too much with the clinical definition of depression.
    • The omission of crucial symptoms that fit the core of the ME definitions such as immune impairments, neurological abnormalities and myalgia will result in misdiagnosis.
    • The lack of recommendation for laboratory testing, such as blood tests to check for viral loads and Natural Killer (NK) cell functions, which will impede possible treatment options.

    Fatigue and Pain

    We found inadequacies in the core criteria. For example, pain was left out because myalgia, headaches and pain are not unique to SEID since they are found in many other chronic diseases. However, fatigue was chosen as the primary symptom, although it is a common symptom in many acute and chronic illnesses. Placing fatigue in the top line of the “diagnostic algorithm” puts fatigue back as the primary focus.

    PEM

    The inclusion of post-exertional malaise (PEM) as a mandatory symptom is important and very welcome. The recommended two day CPET exercise test can be useful for demonstrating an abnormal response to exertion in patients but it also can be dangerous to some patients. Therefore making this untenable as a biomarker.

    Neurological Dysfunction

    Research has shown that ME is a neuro-immune disease. There are definitive findings of neurological and immune dysfunction. It is highly disturbing that symptoms of neurological impairment do not appear as a core symptom.

    Immune Dysfunction and Orthostatic Intolerance

    The panel found some immune dysfunctions such as NK cell cytotoxicity. Nevertheless, they decided that it was not specific to SEID, and excluded it from the criteria. Yet, they included Orthostatic Intolerance (O.I.) as a choice of symptoms even though it is clearly not specific to SEID. O.I. appears in many diseases such as Parkinson’s, Addison’s, diabetes and more.

    Testing and Treatments

    The report fails to list tests that many specialists currently find valuable, such as Viral panels and NK Cell Function values. This omission may cause insurers to refuse to cover such tests, saying they are unnecessary. Experts use these tests to help determine if treatments like antivirals and immune modulators might help specific patients. The omission of the recommendation to administer these tests and possible treatments is a consequential one.

    The Name:
    MEadvocacy.org stated from the start that we believe the name Myalgic Encephalomyelitis, as coined by Dr. A. Melvin Ramsay, is the name that we adopt. In addition, SEID does not properly convey the seriousness of the disease.

    • To define the disease by one of its symptoms does not convey the true complexity and severity of the disease.
    • Exertion intolerance may be interpreted by physicians as a psychosomatic manifestation of "fear avoidance" of exercise.
    • “Exertion” provides the wrong connotation. For example, if we would only stay within our energy envelope, we would be healthy. Unfamiliar doctors may equate exertion with sweat-producing levels of aerobic exercise, when “exertion” can simply be brushing your teeth.

    The Report:
    One of the failures of the IOM report has been that it did not clarify the key question, which disease is SEID replacing? Mary Dimmock wrote a guest blog on Jennie Spotila’s site in November 2013, titled “Which Disease is HHS Studying?” In her blog, Mary communicated the reply that she received from HHS to her question:

    "Both Dr. Lee and Ms. Meck said that the scope of disease to be covered by the new clinical criteria has not been specifically defined at this point and that this will need to be defined as the process goes forward.

    Dr. Lee indicated that the panel itself would need to resolve this issue and that possible outcomes could be ME as a subgroup of the broader CFS, ME as part of a spectrum that includes these other conditions, or ME as a separately defined disease. Ms. Meck indicated that HHS would be asked to clarify what scope of disease was intended at the first meeting. I raised the concern with Ms. Meck that the scope of disease directly affects panel selection and evidence base selection, but she felt that the panel and process would be able to adjust as needed."

    The IOM report did not tackle this crucial question and did not provide a clear answer as to which disease they are replacing. In addition, Dr. Lucinda Bateman, in her comment on the IOM report for the ME Global Chronicle, stated, “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, cannot be used to describe someone who meets published ME criteria. The recommendation is stop using ME/CFS.”

    MEadvocacy.org is interpreting Dr. Bateman’s statement to mean that ME criteria could be used along with the name Myalgic Encephalomyelitis (ME) as officially recognized under the ICD-10-CM code G93.3.

    The following are failures of the IOM report, some due to the charge by HHS to the IOM for the study on ME/CFS.

    • HHS charged the IOM panel to produce “simple” criteria that any GP or nurse can easily use. This resulted in overbroad criteria. Such simplified criteria have not been used for other complex diseases.
    • The use of evidence-based medicine (EBM) was not appropriate for this complex disease due to the gap in proper large scale studies directly caused by the lack of appropriate levels of research funding.
    • It did not recommend a specialty which can best care for patients suffering from this complex disease.
    • There are no recommendations for clinical tests to discriminate differential diagnoses.
    • HHS did not charge the panel to recommend treatments. This leaves a void in care for patients.
    • The IOM report did not provide for time to field-test the new criteria before adoption.
    • Unpublished preliminary results from the ongoing CDC multi-site study was included yet other current research was prohibited. For example, even the Lipkin/Hornig study was not considered even though Drs. Klimas and Bateman were authors of that study as well as IOM panel members.
    • Research criteria were not part of the scope for the IOM or P2P studies. This might inappropriately result in the use of the IOM criteria for research as well, even though that was not the intent of the IOM panel members when creating the IOM diagnostic criteria.
    • This was a US government sponsored study. Historically, it is an independent expert medical group who sets criteria for disease, not the government.
    • There is no data about insurance coverage. It remains unknown whether insurance will cover any visits with specialists for this disease. There is no provision for insurance coverage for specialty tests such as viral titers and NK cell function.
    • The current coverage for Social Security disability (SSDI) is based on the Fukuda criteria. The medical evidence currently required for SSDI does not match with the IOM criteria. The IOM report does not provide recommendation for newly diagnosed patients with SEID and/or currently enrolled patients receiving SSDI as to qualifications for disability coverage.
    • The IOM report recommends clinicians to treat the disease symptomatically, yet, there is no recommendation for the most obvious treatment: rest!
    • There is no recommendation for a warning against CBT/GET.
    • There was no mention or special section regarding the severely affected patients.

    Conclusion
    For the reasons outlined above, MEadvocacy.org came to the conclusion that we cannot recommend the IOM criteria or the SEID name. After much consideration, we decided that the plan for MEadvocacy.org going forward is to stay the course with the original goals, retaining the name Myalgic Encephalomyelitis (M.E.) as per 2015 ICD-10CM diagnostic code 93.3, and continuing to support ME criteria such as CCC or ICC which have been authored by a majority of our M.E. experts, clinicians and researchers.

    Additionally, MEadvocacy.org will continue with its commitment to advocate for awareness of the severe ME patients, as well as for the promotion of research into these patients. We will focus on campaigning for funding for research commensurate with other severe chronic illnesses like M.S. and Parkinson’s.

    Community
    Since the unveiling of the IOM report, the community has had highly diverse opinions of the result. Some were vocal with their approval and welcomed the changes that were recommended. Some agreed with most of the report but felt that it would need some changes before it was something that they could endorse. Some rejected this as a flawed government-controlled redefinition and rebranding effort.

    This split in the community has caused a lot of contention and confusion. Some initial supporters of MEadvocacy.org expected MEadvocacy.org to change its position due to their own perception of a better-than-expected report. Others have expressed their support with MEadvocacy.org's position and want them to continue with their stated view. All factions are looking at this with their own thoughts and expectations, each believing that their view is more sensible and will better serve the community.

    We regret if there was a misunderstanding of what MEadvocacy.org represents. Our hope in writing this article is to clarify our stand, one which has not wavered since the start. We are confident that many in the community share our thoughts and goals.

  • deboruth April 5, 2015, 8:29 pm
    Sasha
    Nielk

    In the US, there is no official diagnosis of ME, yet. WHat I meant was the patients who fulfill the criteria of ME-ICC.

    But I still think that 'ME community' is going to be read as 'patients with ME', not 'patients who want to keep the diagnosis of ME'. I hope MEAdvocacy is going to take a 'we are a group of patients, mostly severely affected, who would like to see X, Y and Z' kind of approach, rather than claiming to represent all ME patients or all severe patients. Wording is going to be extremely important.

    I would hope as well that the patients and advocates who are proponents of the IOM report, criteria and name take care as well not that they are not speaking for the entire community.

    I agree that that's also important. It's easy to fall into the error of believing that our own view is the view of the vast majority, when in fact it's just that our human nature has led us to surround ourselves with like-minded people and seek out confirming viewpoints (and I include myself in this).

    Looking forward to seeing how this develops but in the meantime I'm grateful for the clarification on MEAdvocacy's goals.

    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.