Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Article: Not One Alone: CFIDS Association Board of Directors Take a Stand For the Power Of 'We'

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 2, 2010.

  1. Enid

    Enid Senior Member

    We look from here with some "envy" at those interested now US wise. Though appreciate your difficulties. I for one have never seen "types" (particular symptoms) having suffered all spoken of at various stages on PR. Just ME/CFS and would question the use of fatigue - this being so unrelated to "normal" tiredness. It's a functional crash (bod's). Any types seem to me only to report the collection of symptoms prevailing at the time of diagnosis (damage done to organs etc). United we are but do what ? except all you are doing and have achieved Cort.:thumbsup:
  2. CBS

    CBS Senior Member

    Money; Research! Physician Education! Financial support for patients (revision of Social Security guidelines and rules governing limits on private disability)!

    I'd consider this a good start. It's also quite simple to measure progress.
  3. Cort

    Cort Phoenix Rising Founder

    Do What?

    One thing is to do is to ask what does a successful community look like? These are some of the things I see
    • It looks like a community that focuses its energy on what's working
    • It looks like a community that maximizes its resources and energy
    • It looks like a community that measures its results
    • It looks like a community that works together
    • It looks like a community that forgives past inactions or actions and moves forward
    • It looks like a community that is moving forward
    • It looks like a community that looks for opportunities and seizes them

    One problem that Mark indirectly pointed out are opportunities for action. They are actually all around us but they are not spelled out; they are kind of lost in the ether. I would be the first to admit that the CAA has not always brought them forth.

    Blueprint - For instance, the CFSAC panel always provides recommendations to the Secretary of Health. These always provide an opportunity for action - for patients and groups to clamor and advocate for their fulfillment. The blueprint for action on the federal level is right there

    We get upset at the CFSAC panel for not tracking the success of their recommendations but we haven't either. Groups and individuals could unite around the common goal of getting those recommendations implemented. Mike Munoz, if he doesn't mind my using his name, the former head other Rocky Mtn CFS org, has proposed that the different support groups and advocacy groups come together and present an organized effort. (One tenet of the effort would be not to bash any of the others :))

    The Centers of Excellence have been recommended again and again for years. A organized effort to produce them has never been tried!

    CAA - The CAA does work to achieve those goals - and once a year or twice a year they try to provide movement with the patient community - and really they do a good job at that; they get thousands of people to send emails and letters and phone calls to our elected officials. But during the rest of the year - except for the Congressional breaks - there really isn't much of a focus on getting patients involved in these issues.

    Doing these kinds of things is the opportunity we can bring to the table. The CAA's Board of DIrectors has basically said - we want to partner with you. We know you are doing something different and we want in on it. We want to support you and we want you to support us.

    The CAA was a bit isolated with the Time for Action campaign at first but once they got wind of it Kim contacted Bob to learn what it was about and supported the effort. We walked her up to the front of the room. They want to be involved. The Board wants the CAA to be involved in these efforts. Why have they not been before? Perhaps because its been a long time since they've been tried.

    Kim McCleary - You can say well I think Kim McCleary should go. But how would that work? You would have to convince the Board of Directors to fire her. Personally I don't support that but consider how difficult that would be. Whatever issues anyone has with the CAA and Kim's leadership the CAA is a viable organization that has maintained itself well financially over the years. They have been able to convince big donors and small to pony up. They have made progress on important issues - we can talk about that during Jennies interview.

    They are not a failing organization -they have lots of supporters; take a look sometime at who serves of their various Boards - they have very high profile, very professional group of people who are advising them. They are well connected. They provide great information to the community in the form of their webinars and newsletters. They have a very innovative research program. They were instrumental, I believe, in getting Reeves removed. They are partnering with other womens' groups with similar issues. They have real strengths.

    In short while the organization may have its issues I would be very surprised if you could get the Board to remove her. Even if you it could take alot of effort and time. Like the Name Change issue - that's a non-starter for me for several reasons.

    Effort in my opinion would be better spent organizing ourselves and creating more opportunities for action.
  4. Carryon

    Carryon Mike Munoz

    Littleton, CO
    The Next Big Step...

    It is hard to know if this is a precursor to new policy at CAA or an attempt to help stem an angry tide. I am concerned for CAA when it becomes evident that they are losing at least some of the audience that they are advocating for. I hope that real steps are taken to bridge the gap.

    In any event, it is time for organizations to form a coalition with strong leadership and mission. If this includes CAA, I look forward to the discussion. If not, we move on... There has been several campaigns with organizations working together that have shown promise that uniting is more than a theme. Now can we take the next big step?

  5. aruschima

    aruschima I know nothing

    I was just thinking the same thing, trying to put in word what you just said and clarify what i meant with UNITED. I am looking from the outside in, half around the globe, and the CAA is for me just another mammoth organisation who failed ........and such endless disputes over one organisation, or many more who failed, seems to me a waste of our energy. (If they are seriously interested to bridge the gap, i guess they have to do a lot more than just talk. As Martha said, make the change .....)
    If not, i agree from the bottom of my exhausted heart, MOVE ON, do your thing, what ever it is you want to do. (Personally i think this type of organisations are exactly what has not worked and to quote Martha again ,why do something which has not worked over and over ?) Different grass root groups, which approach and confront governments and institutions directly, around the globe, are a new and good approach.
  6. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    As I stated last year before the WPI Science paper was published -- If the CAA is not willing to take a much stronger and far more effective stance in Washington advocacy, it is time for other groups to step up and provide competent leadership. An inclusive coalition might work well.

    Kim McCleary's CAA has not done that. This PR stuff is long established standard operating procedure for Kim and I don't think it's going to work this time. Too many people are seeing through the fluffy public relations. And, I think this has just completed my decision making process to start a blog. Being threatened with banning after seeing so many other people banned is not exactly conducive to the exercise of free speech.
  7. Marty

    Marty Senior Member

    Please note that there is a difference between discussing a change and fighting. We are in for another 20 years unless we dare to discuss radical change, and that includes learning from past actions. Anyone in this movement has only tried to do their best.

    While I favor the CAA turning back to Marc Iverson's goals, and an equally radical change in the CFSAC committee, unity is not a prerequisite; EFFECTIVE ACTION is. Individuals and small groups on this forum have initiated terrifically effective actions. I think we have more of a community than any group has ever had. Different people react to different projects, and different government officials react to different projects, too. To each his own.

    What we must get away from is wasting patients' energy writing the hundreds of thousands of long letters and begging. We must take the offensive and create consequences for the people in the government to validate and fund our disease. Evaluate your projects by this standard.
  8. shannah

    shannah Senior Member

    Do you have something specific in mind Marty? Can you elaborate?
  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    the problems I have with the CAA is that 1) they participate in education documents written with Peter White (I think it was him, if not, another Wessely school psychiatrist) advocating a mix of good information and then GET. Then they post these to their site with no disclaimer saying GET is harmful to people with ME (although it could be useful to people misdiagnosed with CFS). I cannot provide a blanket endorsement of their site for this reason. I have actually removed them from my list of helpful education sites because of this, even though some of the other information is great.

    and 2) they advocate waiting for determination of exact ultimate causation (in the entire CFS population) to get a proper name. Many diseases are named for some intermediate pathology and not ultimate causation, and there is no need to wait for causation. Myalgic encephalomyelitis does actually perfectly describe at least one of the subgroups and would be fine as long as the UK people don't object to the (prejudicial and unnecessary) baggage it has picked up there. We all have suffered under a confusing and prejudicial name far too long.

    While advocating for a name change may not be successful and we don't need the CAA to spend tons of money on it, they should change their official policy to recommend a serious name be immediately adopted. It's inappropriate for an official recommendation to be to wait for ultimate causation of the entire CFS construct to be established. There are lots of better-accepted, better-studied diseases that we still don't know any ultimate causation.

    Any official recommendation should be to immediately adopt the Canadian definition (or write a new definition with post-exertional malaise required and other signs and symptoms) and form subgroups or new disease classes based on diagnostic findings, and to use a serious (or several serious) name(s). It doesn't even matter whether a specific name is suggested; it just has to be something serious.

    Those people with no alternate diagnosis who don't fit the Canadian definition need a new name and to be studied separately. Their disease and the diseases of those with other persistent fatigues are important and deserve appropriate medical intervention, too.

    I don't see these problems as serious enough to not be able to work with the CAA. (I don't know anything about people being banned or any backstory on that, sorry; and I know nothing about previous advocacy efforts, sorry again; I'm not new to the disease [although my diagnosis is relatively recent], but very new to the ME community; wish I'd known you all from the beginning, though)

    I'm all for creating consequences for people in the government, but how do we do that? That takes either Congress or the media, which again means letters and advocacy.
  10. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    or a lawsuit, which would be really cool because it would be binding on the future and applicable to other diseases, but it would be expensive, a lot of work, and privacy-invasive.
  11. Mark

    Mark Former CEO

    Sofa, UK
    I agree entirely.

    Waiting for exact and definitive information about the cause of illness for the entire CFS population, before we can be treated with appropriate respect like other sick people, is precisely the problem. In our case it is even worse, and research cannot be funded properly until a cause has been found. It's a Catch-22.

    I am only really posting now, though, to clarify that ME does not in my assessment carry special prejudicial baggage in the UK - or at least, no more so than any of the alternatives. There are probably people still around who think "ME=psychological", but in general they dare not say so in public any more. At best, they may cautiously suggest that it may be, but in my very limited exploration of the opinion of people I've spoken to in the last year, the situation is this:

    They haven't heard of "ME/CFS". They generally haven't heard of "CFS" - unless they know someone who has it. They have almost all heard of ME. And they think it was long ago established that ME is real and physical, and are startled to hear that this is still in any dispute, and shocked to hear that research is not taking place. In fact, they tend not to believe that government-funded medical research is not taking place. That argument was supposedly settled a decade ago...they don't realise that nothing has changed.

    That's why "CFS" was coined, of course: because they had lost the argument and needed to re-define. I increasingly try to get into the habit of just calling it ME.

    You are quite right that illnesses should not need a full understanding of the pathophysiology to justify a medical name. Most illnesses, actually, are inaccurately described, up until the point where they are fully understood - at which point, they hopefully cease to exist. Myalgic encephalomyelitis is as good an approximation as any, and it's a really big sign of progress that ME has finally been incorporated into the name in the US. Small though that step at CFSAC may appear, it's hugely significant, as evidenced by the rapid and immediate responses that turned "ME/CFS" as stated at CFSAC into "CFS/ME" when it hit the press.

    I think one can look at the history of how these names were coined and analyse it like this. "ME" means "real". "CFS" means "imaginary". "ME/CFS" means "real, or maybe imaginary". "CFS/ME" means "imaginary, maybe real".

    So the right name for our illness is ME, and we use "ME/CFS" only in order to remain in contact with those who know that label.

    Let's condemn our slave name to the dustbin of history. Have you ever met a patient who liked the name "CFS"? I very much doubt in the absence of a good alternative, ME will do for me.

    (Only downside being, of course, the PR domain name! Would not be a simple process to ditch that...but hey, we can still feel proud, as a US-based site, that we got the 'ME' in there ahead of the game...)
  12. aruschima

    aruschima I know nothing

    Why always make one step forward and two back ?
    Why not move five step forward and do not look back!

    We know what we have; over 3000 research papers up to this date, combined with our own test results AND the recent discovery of a possible link to a retrovirus, prove without any doubt that we have an Acquired Neuro-immune Disease (or Dysfunction) AND if there will be an X or P or E in front of that, so be it, but in the meantime, please do not waist another minute on the name game.

    Name it by what it is AND demand from clinicians/health institutions/governments to validate over 3000 research studies.
    Validate the disease !

    MOVE ON !
  13. parvofighter

    parvofighter Senior Member

    Strategy 101

    Mark, you made an astute comment earlier that I believe hit the nail on the head, and I wanted to add to it:
    A Strategic Fork in the Road for the CAA
    The time is nigh approaching when advocating/research needs for depressed/sedentary patients will become irrelevant to - and blatantly incompatible - with the advocating/research needs of the neuro-immune disease ME/CFS. I say blatantly, because ME/CFS patients have understood this inherent and obscene contradiction all along. What WILL be a politically important tipping point however, will be when powerbrokers like Lipkin and Collins openly define ME/CFS as a retrovirally-associated neuro-immune entity, discrete from psychogenic and idiopathic CFS. Timing is everything, and I am inclined to think that when THAT public acknowledgement of this dichotomy happens, the patient community - and indeed government and research community - must DEMAND a crystal clear redefined statement of Mission from of the CAA.

    WHICH strategic direction does the CAA intend to take?
    Because in order to achieve credibility, I believe the CAA WILL need to choose. By not choosing for the last 20 years (as WillowJ intimated in an earlier post), the CAA has sowed confusion (and slowed our deliverance from this hellhole of ME/CFS) by advocating CBT/GET-as-treatment, without meticulously and 100%-of-the-time, separating the potential benefits for depressed patients, from the dire dangers of these modalities for ME/CFS patients. And even if the CAA had had a squeaky clean approach to these issues, the omnipresent potential for media confusion, and distortion of facts by the psycholobby has pervaded and tainted progress. By the time Collins et al openly acknowledge that ME/CFS is a discrete entity, the strategic illogic and indeed clinical danger of "having it all" in the world of "CFS" will have become abundantly and tragically clear.

    • Will the CAA go for the 90% market share, and elect to represent psychogenic fatigue - and jettison XMRV/MLV neuro-immune ME/CFS?
    • Will they jettison psychogenic fatigue, and aim to represent the recently high-profile interests of the XMRV/MLV neuro-immune ME/CFS community?
    • Does it matter what they choose if more relevant organizations emerge? I don't say this to be spiteful. This is a VITAL question for the CAA board to address. Any reasonably competent Board faced with an organizational history of 20 years of trundling in low gear, trumped by a dark horse on a tight budget, in a couple of years, would HAVE to be asking tough questions and making courageous decisions in a bid to gain relevancy in this new environment. Particularly if they had turned away from earlier retroviral research.
    The 3rd man: And what about the poor sods that have truly idiopathic fatigue, that don't have XMRV/MLV, that aren't depressed or sedentary, and that are cursed with the next generation of undiagnosed serious illness that happens to have "Chronic Fatigue" as one of its prominent clinical features? Who will speak, and guide research for them? It would be a colossal, indeed criminal act of deja-vu to lump them together with the all-fatigue-is-psychogenic aficionados, whether in an advocacy/research organization, or a government department.

    A new Mission for the CAA: Bottom line, the CAA is approaching a massive fork in the road, and their Board and executives should be actively preparing for this imminent eventuality. Of course what mission the CAA chooses will not impact on the inevitable explosion and diversification of interest in ME/CFS. Just as there is a natural explosion of XMRV-related advocacy initiatives online already (and I submit this is a GOOD thing, better serving the mosaic of needs of this community, while also potentially building critical mass on issues we all agree on, such as accelerated clinical trials), I predict that we will see a proliferation of ME/CFS advocacy organizations. Analyzing the start-ups doesn't really interest me, and for this reason when it comes to advocacy and education, I and many others like to lend psychic or tangible support to multiple initiatives. What WILL be interesting however will be the organizations with staying power. And it will be the organizations with relevance to the needs of ME/CFS patients, strategic clarity that is not muddied by a "We-serve-all-Chronic-Fatigue-patients" mandate, and scientific AND political credibility, that will survive the shakedown.

    It would be naiive of the CAA to assume that their role as "inside voice" for the ME/CFS community will withstand the test of time and relevancy.

    The leadership issue: And in the interim, what ABOUT that leadership issue? The CAA article blithely stated,
    "CFS will not be solved by one person or one organization alone."
    How is it then, that Annette Whittemore and the WPI have singlehandedly achieved more traction internationally for ME/CFS socio-political issues AND science in 2-3 years than the CAA has achieved in America in 20? Painful though this may be for the CAA to acknowledge, it is VITAL. A brutally frank evaluation of this tipping point must happen, for the CAA to have any chance of relevancy or meaningful momentum in the next 2 decades - much less the next 2 years. If the earth-shattering events since October 8th, 2009 don't warrant a leadership, and indeed organization-wide strategic review, I don't know what does. It's strategy 101.

    Let's call a spade a spade. "XMRV" didn't change everything. Annette Whittemore and the WPI did (with a canine nod also to George, Joe Derisi and his viro-chip). I'd add this isn't gratuitous wallowing-in-the-past. If the CAA doesn't face these facts head-on, and if the board shows no insight of how monumentally the CAA has been upstaged, they have no hope of learning from their mistakes.

    So what can individual patients DO?

    With the increasingly limited energy/health I have, I am being forced to be ruthless about where I expend my energy. So user-friendly advocacy initiatives that provide ready-made letters for me to edit/email, and handy target lists of email addresses, are great as far as I'm concerned. The sick joke in this community is that our most experienced advocates ultimately become too ill to attend CFSAC, to form the next CAA, or to advocate VIGOROUSLY and consistently.

    Finding political hotbuttons - and pushing them

    As I see it, one of the fundamental impediments to us getting
    SERIOUS research money is the facile perception that ME/CFS doesn't kill.

    This is something that I CAN do something about, as out of necessity I've had to immerse myself in cardiac research to keep myself ticking. As I wrote in my submission to CFSAC ( I believe that vasculitis and endothelial dysfunction (dysfunction of the inner lining of our blood vessels, particularly the microcirculation) are a significant cause of cardiac and neurological issues in many ME/CFS patients.

    On the flip side, the cardiology community is scratching their heads, trying to figure out why mostly women (but also men) with "Pain Syndromes" keep presenting to emergency departments with "Persistent Chest Pain" - but normal coronary arteries. And then within 5 years, some 40% of these patients have a major cardiovascular "event": stroke; myocardial infarction; cardiac hospitalization; or death.

    Do you see a potential connection with us dying 25 years earlier from heart failure than the "normal" population? Our message boards are full with accounts of patients with nonspecific chest pain, who are being routinely laughed out of emerg departments and cardiologists' offices, because they test "normal" on routine cardiac testing.

    As it happens, the NHLBI has invested BIG money into understanding these women, called the WISE (or "Women's Ischaemic Syndrome Evaluation") study, and there is virtually a WISE industry funded by the NHLBI - many follow-up studies, of which I believe an XMRV/MLV and ME/CFS analysis should be one asap! I believe ME/CFS is the missing link in their understanding of what is called "Atypical Angina" in women and men. In other words, as I wrote in my submission to CFSAC, the NHLBI-funded researchers need to go back to their WISE cohorts with these "pain syndromes", evaluate them according to the Canadian ME/CFS Criteria, and test them for XMRV/MLV's, NK cell dysfunction, etc. I believe they will not only strengthen the outcomes for patients with endothelial dysfunction, opening up new avenues of more effective therapy, but also confirm the lethality of ME/CFS. And push that button for more FUNDING!

    Coincidentally, Jamie Deckoff-Jones addressed endothelial/vascular dysfunction first in her list of pathophysiological groups that ME/CFS might be sorted into:

    • "Vascular spasm (migraines, flashbacks, black outs, dysautonomia, microvascular angina, dysrhythmias, GI symptoms, Raynaud's)"

    All this to say that while I look for opportunities to add my voice to issues that I believe would benefit from critical mass in advocacy, I am also quietly thinking about how to identify and push political hotbuttons, to help us leap-frog our progress more quickly forward. So when I'm able, I'm working on how to tackle this issue, and to build liaisons with the cardiology community. It's only one of many strategic hotbuttons, but it's one that I can do something about.

    An Example of a Strategic Hotbutton: Proving that we're dying from ME/CFS
    Proving that we're dying from Persistent Chest Pain and heart failure is one hotbutton that has been sorely neglected, but that could bring ME/CFS MUCH higher up on the research funding radar screen. Cardiologists are genuinely concerned that these women (and men) are dropping like flies. They WANT to improve these dismal outcomes! On the flip side, health administrators reel at the huge consumption of resources by these patients. Simply put, men and women with Persistent Chest Pain keep coming back to emergencies and to cardiologists over and over and over because we're not getting sensitive and specific enough diagnostics. And without a good diagnosis, the efficacy of cardiac therapy is crippled. Echocardiograms, stress tests, MRI's, CT's - the bread and butter of an emergency department/cardiologist's diagnostic toolkit - typically will MISS the diagnosis of vasculitis/endothelial dysfunction.

    Suffice it to say, I believe that individuals can make a difference, particularly by working on the particular hotbuttons that they have potential influence over. The "What to DO" question will be answered individually by different patients, depending on their health status, their background, and their aptitudes.

    Focus actions that drive BREAKTHROUGH change
    But I do believe it behooves us all: the CAA, patients, researchers, everyone, to think about strategy, and how to drive BREAKTHROUGH change for our community, not just incremental improvements. And that requires - especially for the CAA - strategic insight, and CHANGE.

    And again... B2B (back to bed)...
  14. Cort

    Cort Phoenix Rising Founder

    I think they just seem like a 'mammoth' but they employ what, 8 people? The CAA is actually a very small organization. Its the type of organization where the CEO is responsible for writing much of the material. No, its not a mammoth organization - although it may seem that to us because it is so evident to us.

    Most of the organizations that have evolved around CFS are very small. The IACFS/ME is almost entirely volunteer run. Many of the support groups really consist of just a few active people. The WPI consists of a small # of people.

    All of them are dependent on people volunteering their time/money....
  15. Cort

    Cort Phoenix Rising Founder

    What kind of PR activities do you suggest?
  16. Cort

    Cort Phoenix Rising Founder

    I think that will be easy to accomplish. My god that is the easiest thing of all; all everybody the CAA included wants is clarity -- discrete subsets - I look forward to it happening. Everybody will greet that with open arms.

    I'm really puzzled at the idea that the CAA is not interested in or has not been involved in viral research. Nobody has been involved in or spent more money over time on viral research than the CFIDS Association. Just look at all the grants - they were the ONLY ones to fund DeFreitas, they funded Martin, they were funding Grossberg in his search as recently as 10 years ago, a couple of years ago they funded Glazer in his EBV research, they're now looking at gut flora (ie bacteria) and they just finished funding Hubers HERV-K research....and you are wonder if the CAA can get behind a viral subset???? :eek:Honestly that boggles my mind. :confused:

    How did that idea come to pass? Was it their cautionary stance on XMRV? I understand that it was upsetting (and a mistake in some ways) but it doesn't look it was such a bad way to go right now.

    The problem with this statement is that it is my understanding that the research does not show that depressed people with CFS benefit more from CBT than non-depressed people. What the CAA has done is follow the research results - sorry about that! Those reports show some benefit to some patients and they are backed up DR. Klimas', Dr. Bateman's and others experiences. When you talk about the 'dire dangers' of CBT perhaps you should take a look at the MEAssociation poll results; while they did show that GET can cause big problems, that did not show with CBT; it wasn't very successful but it wasn't very harmful either.

    We shall see. You're suggesting that if the disorder bifurcates the CAA will have to choose one group of patients and not the other. (Just before that you implored them not to abandon the non XMRV patients). I don't know that will be true - we shall see.

    I want the CAA to have a more 'outside voice' but I don't how naive this is...Look at where the CAA is now...on the BWG, they're part of Lipkins study, they're building a research network....they're the only ones in there - there's absolutely competition in sight... The naive thing might be to think that they won't adjust and grow. Here they are - 25 years later - not always loved but very present and still viable.

    Are you actually saying the Annette Whittemore and the WPI will solve CFS? And what is blithe about that statement? Are you saying because one researcher made the big discovery that everyone else should just fold their tent??? Or that the leadership of the CAA should be reviewed because they didn't discover XMRV????? I'm a little lost here, honestly..

    No, No, No!!!! It was XMRV that changed everything. Yes the WPI did the research - but once they found it there was no novelty to what happened afterwards...the next steps were clear..sequence it, try and grow it, see if it can infect other cells - this was not Nobel prize winning stuff - this was finding a bug and then doing the established procedures........It didn't take great insight or even leadership - it just took doing the steps one after another.

    Dr. Lombardi stated Dr. Silverman pushed them to do it and they looked (actually a graduate student looked!) and they found it. I'm happy they did! You can do really important work without having stunning insights into something. That's what happened here......

    Great idea - good luck! Microcirculation is a fascinating area of research - my laymen's guess is that it may prove vital to CFS. :cool:

    Great idea!


    Agreed - BREAKTHROUGH Change.
  17. Cort

    Cort Phoenix Rising Founder

    Validate the Disease!

  18. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    Truths. No more spin. No more spin doctor.

    If you once forfeit the confidence of your fellow citizens, you can never regain their respect and esteem. It is true that you can fool all the people some of the time; you can even fool some of the people all the time; but you can't fool all the people all the time.
    Abraham Lincoln
  19. parvofighter

    parvofighter Senior Member

    Discussion on CAA's Strategy - 1

    <link rel="File-List" href="file:///E:%5CDOCUME%7E1%5CDANIEL%7E1%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01%5Cclip_filelist.xml"><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:eek:ffice:smarttags" name="PersonName"></o:smarttagtype><!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:punctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" LatentStyleCount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><object classid="clsid:38481807-CA0E-42D2-BF39-B33AF135CC4D" id=ieooui></object> <style> st1\:*{behavior:url(#ieooui) } </style> <![endif]--><style> <!-- /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> About the CAAs Strategy<o:p></o:p>
    Cort, let me see if I can clarify, as I<st1:personname w:st="on">'</st1:personname>m not quite sure you got the gist of what I was saying. Id like to preface this by saying that I am dismayed by the liberties you took in incorrectly paraphrasing many of my comments. Your editorial license is legendary and often entertaining, but not always constructive, as it diverts from important topics with red herring issues. As you know, many patients here, including me, are seriously ill with ME/CFS. You do us a disservice to open intellectual dialogue on this forum, and show disrespect to the whole community by creating make-work projects for ill patients, when you so liberally and carelessly misinterpret our words on important topics. If you dont understand something, why dont you PM me, and perhaps I can clarify. But you should know better than to twist patients words, cause Im gonna call you on it. I'd also like to add that I wouldn't bother writing about CAA strategy if I didn't care about the outcome. Like it or not, the CAA is a significant player in the current landscape. Here are some specific suggestions on how they might become more relevant to ME/CFS patient needs.

    I stated that with the XMRV findings, the CAA will need to achieve strategic clarity and clarify exactly which "CFS" patient group they serve: I submit that they CAN<st1:personname w:st="on">'</st1:personname>T do it all, AND maintain credibility in this new XMRV environment.
    I<st1:personname w:st="on">'</st1:personname>d like to emphasize that I do NOT for a moment advocate the grouping of all types of fatigue into "subsets", because this simplistically implies that there is an overarching "set" that unifies all types of fatigue. The whole problem with CFS has been that practitioners have dictated the science, rather than following it. I believe the science will show that we are dealing with drastically different, discrete, and unique medical entities, and in order to do justice to this disparity, indeed the dichotomous needs, we need to SPLIT advocacy/research responsibility for these groups. While there will always be a need to stratify patients with the same diagnosis according to severity, it is this subset mentality that connotes that drastically different kinds of "fatigue" all fit under some kind of medically logical umbrella. This subset mindset has resulted in decades of confusion, muddied cohorts, and advocacy strategy that is at cross-purposes - within the various interests currently represented by the CAA. But it does benefit those who somehow benefit from a larger market share. Im going to challenge you on this Cort: HOW does lumping retroviral ME/CFS together with psychogenic depression under one advocacy organizations roof benefit the patient? Give me 5 good reasons.
    <o:p> </o:p>
    Divide and conquer<o:p></o:p>
    Far from it, the discovery of XMRV should make it abundantly clear that some groups of fatigue (i.e. the neuro-immune disease M.E./CFS) have no logical link with, say purely psychogenic fatigue. I should also interject here to address a cogent comment made to me in PM, that there are many unknowns when it comes to psychogenic fatigue. For example, we have no idea what proportion of the non-XMRV patients have purely psychogenic fatigue, that responds to CBT/GET-as-treatment, and that does not require biomedical intervention. After all, how many long-term follow-up studies have been done, on robustly defined cohorts of CFS patients, with careful provisions to prevent self-selection bias? But this is where I diverge. For the fatigue types that DO respond both at treatment and long-term follow-up to CBT/GET, why the fuss about calling it psychogenic? As Andy Mason of the FDA Commentary noted, if you treat ME/CFS patients with antiretrovirals, and they get better, that pretty much confirms the retroviral diagnosis. Ergo with patients that respond definitively to CBT/GET. Why resist treatment IF it cures the problem? Most of us ME/CFS patients would give our right arm if we could have effective treatment and get our lives back. Its not the psychogenic we object to its the fact that the psychogenic model has been peddled as treatment. It hasnt healed us has distracted the medical community from curing us, and in fact has harmed many.
    <o:p> </o:p>
    My reference in my prior post to the 90% reflected the 10-fold magnification of the CFS population, with the dilution of CFS criteria by the CDC. Again, given the deplorable level of scientific rigor in studies on CFS (eg. weaknesses in cohorts, follow-up; self-referral; self-selection; survey design, absence of measurement of immunological and other physical correlates etc.), it may well be that a treatable physical component arises. And we really dont know what the percentages are I should have made that clear. That said, the airwaves are humming with reality shows and success stories from previously sedentary/depressed patients who exercised and CBTd their way to health and maintained it. In the right population, there IS evidence that CBT/GET approaches can be transformative i.e. cure the problem. But ME/CFS is NOT the right population. And many of the idiopathic fatigue types may not be either.
    <o:p> </o:p>
    To whit, in the early stages of my disease, I joined weight lifting classes; went cycling with a riding group; rollerbladed; hiked whatever I could do to try to pull myself out of my ME/CFS. In the early stages, I had remissions of a few months at a time, during which time Id ramp up my efforts. And Id always ultimately relapse and be worse off than the prior relapse. A longitudinal study of my response to GET would have been unequivocal: it was not a cure, in fact it made me worse. And it would give me no measure of consolation to see that the same people fighting for a cure for ME/CFS were also peddling CBT/GET.
    <o:p> </o:p>
    That 3<sup>rd</sup> Man: Idiopathic Fatigue<o:p></o:p>
    Nor do we know how many different causes of fatigue are represented under the 3<sup>rd</sup> banner: idiopathic fatigue. Some may be immunological. Some may be viral. Some may be of rare genetic etiology. The list goes on. But allowing this Third Man, idiopathic fatigue, to be automatically subsumed under a joint umbrella with psychogenic fatigue will guarantee that these idiopathic fatigue cases will continually be overshadowed by the interests of the psychogenic group. Faced with the crumbling of reputations and a behemoth treatment empire, I guarantee that there will be push-back from the psychs to maintain market share. Allowing the idiopathic fatigue groups to be sucked into this vortex would merely transfer our suffering on to theirs. Its unethical, and the CAA should recognize the reality of this moral hazard.
    <o:p> </o:p>
    I should also point out that I dont for a moment believe that ALL psychiatrists and psychologists do bad science. I for one do mindfulness/meditation, and Heart Math (a form of biofeedback) but as coping strategies, not treatment. However the denouement of ME/CFS advocacy mixed in with psychogenic fatigue at the hands of a cadre of influential psychiatrists with a healthy dose of moral hazard, has been nothing short of disastrous. We cannot allow the same to happen with the poor souls that have idiopathic, non-psychogenic fatigue.
    <o:p> </o:p>
    The CAA - given the XMRV discovery, and the known backdrop of dire consequences of CBT/GET as treatment for ME/CFS - has no business attempting to still represent ALL types of "chronic fatigue". This is greed, not strategic intelligence. They MUST decide, IF that is, they wish to gain credibility in this shifting environment. To use an analogy the CAA is fond of using, this would be like medically grouping apples and oranges (ME/CFS associated with XMRV/MLV<st1:personname w:st="on">'</st1:personname>s; versus psychogenic fatigue that can be cured by CBT/GET). And keep in mind that there will be grapes, figs, and bananas in there too, the likely multiple types of idiopathic fatigue of multifactorial origin, which have no business being once again muddied with the psychogenic fatigue, or with retroviral-induced fatigue.
    <o:p> </o:p>
    [FONT=&quot]Let me give you another example. Lumping a retroviral illness, say AIDS, together with psychogenic depression in an advocacy/research organizaton, makes no sense medically. It makes no sense strategically. And it runs the risk of muddying the research waters. Are all AIDS patients depressed? Do all depressed patients get AIDS? Can we treat AIDS with antidepressants? (And Im NOT talking about coping strategies for any chronic condition). These are useless questions if you are trying to find a cure for AIDS. And theyre expensive, because this confusion results in waste of precious research dollars and advocacy energy that could be much more effectively targeted. Its an opportunity cost. Lumping them together merely creates a drag, a sea-anchor to slow down progress on both AIDS and depression research respectively.
    <!--[if !supportLineBreakNewLine]-->
  20. parvofighter

    parvofighter Senior Member

    Discussion on CAA's Strategy - 2

    <link rel="File-List" href="file:///E:%5CDOCUME%7E1%5CDANIEL%7E1%5CLOCALS%7E1%5CTemp%5Cmsohtml1%5C01%5Cclip_filelist.xml"><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:eek:ffice:smarttags" name="country-region"></o:smarttagtype><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:eek:ffice:smarttags" name="place"></o:smarttagtype><o:smarttagtype namespaceuri="urn:schemas-microsoft-com:eek:ffice:smarttags" name="PersonName"></o:smarttagtype><!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:punctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> </w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" LatentStyleCount="156"> </w:LatentStyles> </xml><![endif]--><!--[if !mso]><object classid="clsid:38481807-CA0E-42D2-BF39-B33AF135CC4D" id=ieooui></object> <style> st1\:*{behavior:url(#ieooui) } </style> <![endif]--><style> <!-- /* Font Definitions */ @font-face {font-family:Wingdings; panose-1:5 0 0 0 0 0 0 0 0 0; mso-font-charset:2; mso-generic-font-family:auto; mso-font-pitch:variable; mso-font-signature:0 268435456 0 0 -2147483648 0;} /* Style Definitions */ p.MsoNormal, li.MsoNormal, div.MsoNormal {mso-style-parent:""; margin:0in; margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:12.0pt; font-family:"Times New Roman"; mso-fareast-font-family:"Times New Roman";} @page Section1 {size:8.5in 11.0in; margin:1.0in 1.25in 1.0in 1.25in; mso-header-margin:.5in; mso-footer-margin:.5in; mso-paper-source:0;} div.Section1 {page:Section1;} /* List Definitions */ @list l0 {mso-list-id:34234096; mso-list-type:hybrid; mso-list-template-ids:-1221279302 67698689 67698691 67698693 67698689 67698691 67698693 67698689 67698691 67698693;} @list l0:level1 {mso-level-number-format:bullet; mso-level-text:; mso-level-tab-stop:.5in; mso-level-number-position:left; text-indent:-.25in; font-family:Symbol;} ol {margin-bottom:0in;} ul {margin-bottom:0in;} --> </style><!--[if gte mso 10]> <style> /* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman"; mso-ansi-language:#0400; mso-fareast-language:#0400; mso-bidi-language:#0400;} </style> <![endif]--> The CAA is not interested or not involved in viral research: NOT my words. QUOTE=Cort;141893]I<st1:personname w:st="on">'</st1:personname>m really puzzled at the idea that the CAA is not interested in or has not been involved in viral are wonder if the CAA can get behind a viral subset???? [/QUOTE]Cort, please do not editorialize my words. I said neither of these you attributed to me. This is what I DID say:
    How is it that Dr Mikovits, on hearing about the abnormal lymphoma clusters in ME/CFS patients, immediately exclaimed, "That<st1:personname w:st="on">'</st1:personname>s a retrovirus!". While the CAA stopped pushing for retroviral research, and didnt ask that question for years? I<st1:personname w:st="on">'</st1:personname>m not debating whether they funded DeFreitas. But they sure hung retroviral enquiry out to dry and if it weren<st1:personname w:st="on">'</st1:personname>t for the WPI, we<st1:personname w:st="on">'</st1:personname>d still be twiddling our thumbs. Ask any severe ME/CFS patient, Did you have hope to get out of your bed, before October 8<sup>th</sup>, 2009. And where did this hope come from? In the midst of a crisis of confidence in their leadership and strategy, the CAA needs to critically review their path.

    Subjective polls vs objective scientific evidence
    Cort, I<st1:personname w:st="on">'</st1:personname>d rather hang my hat on robust biomedical research, rather than another subjective poll. Surely you recognize the flaws of self-reported outcomes, particularly when the process at CBT/GET clinics self-selects the sickest patients out of the research cohort? That said, I AM very interested in the following:

    • The morbidity stats of ME/CFS patients from heart failure;
    • The strenuous exhortation from my German cardiologists NOT to allow my heart-rate or BP to exceed 130, to prevent irreversible cardiac compensation, a risk for many of their viral cardiomyopathy patients;
    • The findings from the Pacific Fatigue Lab that exceeding the anaerobic threshold will precipitate "crashes" in ME/CFS;
    • The findings that Dr Snell discussed at the latest CFSAC meeting, about the dangers of precipitating immunological and multisystem relapse by performing a test/retest protocol on seriously ill ME/CFS patients with XMRV; and
    • My own experience, which is that my heart rate skyrockets, my BP goes out of control; and my angina rages, when I am told that this is "all in my head"; and/or when I am forced to exercise.
    Given the prevailing theme of CBT, which is that patients need to override maladaptive coping strategies and exercise avoidance, this creates a dangerous mindset in patients that they should discount their very real physical symptoms, and push through the symptoms. Exactly the opposite of what the above objective findings decree.
    <o:p> </o:p>
    I would add that I have done cardidology stress tests in the past, which have sent me into relapses for months - indeed, I haven<st1:personname w:st="on">'</st1:personname>t recovered from the last one well over a year ago. It was a no-brainer, given my recurrently unstable angina, to refuse the latest stress test.
    <o:p> </o:p>
    It wasnt very successful but it wasnt very harmful either<o:p></o:p>
    As part of your argument against the dangers of CBT you stated,
    The fact that a treatment modality "wasn<st1:personname w:st="on">'</st1:personname>t very successful but it wasn<st1:personname w:st="on">'</st1:personname>t very harmful either" should be a physican<st1:personname w:st="on">'</st1:personname>s signal to stop wasting his time. Particularly when patients are dying 25 years earlier than the norm from heart disease, cancers, and suicide. At some point, an intelligent ME/CFS advocate would say, "all this focus on CBT/GET is distracting us from the pursuit of a CURE for ME/CFS much less effective treatment".
    So it is small consolation to the legions of severely ill ME/CFS patients that the only treatments available to them (eg. in the <st1:place w:st="on"><st1:country-region w:st="on">U.K.</st1:country-region></st1:place>) "aren<st1:personname w:st="on">'</st1:personname>t very successful, but they aren<st1:personname w:st="on">'</st1:personname>t very harmful either".
    <o:p> </o:p>
    Try telling a cancer patient: "We<st1:personname w:st="on">'</st1:personname>re going to not give you chemo or radiation, but we ARE going to give you low-flow O2 via nasal prongs. It<st1:personname w:st="on">'</st1:personname>s not very successful, but it<st1:personname w:st="on">'</st1:personname>s not very harmful either". Meanwhile the cancer metastasizes. Cort, I fully recognize that you dont share the sense of urgency that many severely ill ME/CFS patients have, and this is perhaps reflected in your laissez-faire attitude towards CBT/GET for ME/CFS patients. Time is ticking for severely ill patients and thats why we care about strategic focus at the CAA. You should too.
    <o:p> </o:p>
    The only reason that physicians in the past have been able to get away with this medical hogwash with ME/CFS has been their ability to ignore the biomedical origin, and the morbidity/mortality of this retroviral associated disease. Now that we<st1:personname w:st="on">'</st1:personname>re approaching confirmation of a significant role for XMRV in ME/CFS, that kind of flimsy argument doesn<st1:personname w:st="on">'</st1:personname>t hold. (It never should have).

    The CAA MUST Choose a strategic path to be credible
    Yes! That<st1:personname w:st="on">'</st1:personname>s exactly what I said. Although I would add, they will have to choose one group and not the others

    I WANT the CAA to abandon the groups they cant genuinely serve!
    No, just before that, I expressed concern that the poor sods who don<st1:personname w:st="on">'</st1:personname>t have XMRV/ME/CFS and who don<st1:personname w:st="on">'</st1:personname>t have psychogenic fatigue are at peril of not having A voice. I did NOT say it would be a tragedy if that voice were not the CAA. I also stated that it would be a tragedy if they were automatically lumped (by the CAA or others) together with psychogenic fatigue, just because we don<st1:personname w:st="on">'</st1:personname>t know the etiology of their fatigue. Weve seen where that got ME/CFS.
    CAN the CAA adjust and grow if they don<st1:personname w:st="on">'</st1:personname>t change their we-are-the-fatigue-guys-strategy?
    Cort, the theme of my post was that in order for the CAA to adjust and grow, they MUST achieve strategic clarity and address gaping weaknesses. And that will require them to choose a path. The past 20 years are testimony to the reality that the CAA has NOT adjusted and grown. The outrage provoked by mere mention of the CAA on other forums, is testimony that the CAA is sufficiently out of touch with pressing issues in the ME/CFS community that they inspire rage in a significant proportion of well-informed constituents, not support. If this doesnt concern the CAA Board, it should.

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