Talk about a jolt. Kim McCleary has been the face of the CFIDS Association of America (CAA) for over twenty years. More than anyone else she’s responsible for what the CFIDS Association of America is today, and today, after 22 years at the helm, she announced that she’s leaving the CAA on June 14th as her husband relocates to another job. She’ll stay on as member of the Scientific Advisory Board and the CFIDS Association will begin a nationwide search for a new leader immediately.
Kim McCleary steps down after 22 years at the helm of the CFIDS Association of America
Kim was always the consummate professional and the CFIDS Association reflected that. Kim’s goal from the beginning was to get chronic fatigue syndrome (ME/CFS) into the medical mainstream so that it could reap the enormous advantages of that. That meant, above all, the CAA maintaining very high standards, the CAA often working behind the scenes, gaining trust, building confidence and not being the kind of aggressive organization that some people wanted but in your face advocacy was never Kim’s gig. (She did it well, though, when the CAA went after Dr. Reeves).
It’s no surprise that the CAA has done webinar after webinar on the FDA meeting ; this type of event – which places ME/CFS right smack in the middle of same discussion with HIV, breast cancer, Alzheimer’s is what Kim McCleary has been building towards for over 20 years and it’s kind of astounding to me that just as this is happening, she’s leaving.
Smart and Creative
Some people think of the CAA as kind of conservative and in certain ways they have been conservative (and their website looks ancient :)) but I’ve always found them to be quite creative. I cheered when they got the CDC to fund the first media campaign ever for a disease. There were the Scientific symposium series in the early 2,000’s, the CFS Research Review sent to 1,000’s of professionals, the Grassroots Action Center, the Lobby Days, the almost yearly 3-day CFS researcher jam sessions, otherwise known as the Banbury meetings (which they don’t promote for some ungodly reason); the webinar series packed full of information, the Chronic Pain Alliance Collaboration, the first nationwide ME/CFS Biobank and Patient Registry, a dynamic (and successful) research program, the win at the Sanofi Challenge and a soon to be announced partnership to support approval of a drug for ME/CFS.
Chronic fatigue syndrome never made it into the mainstream under Kim McCleary’s watch but it’s getting closer. Former DHHS liason to CFSAC, Dr. Wanda Jones told me the attitudes towards ME/CFS have shifted greatly in the past several years and the recognition given to it recently by the FDA probably reflects that. Kim McCleary and the rest of the ME/CFS community had the misfortune of bucking incredible headwinds at the NIH during her term.
Brutal Headwinds
In fact, just about every thing that could go wrong at the NIH did go wrong once the program was shuttled off to the Office of the Director over ten years ago, and was put into the funding structure from hell. The three federally funded CFS research centers were closed, the special grant review panel for CFS consistently lacked CFS experts, the research budget tanked and it took arm-twisting by Senator Reid to get the Institutes to pay up for small grant package they’d agreed to. As a measure of how brutal things were – the budget for ME/CFS research declined even as the NIH budget almost doubled.
The CAA, with their professional DC lobbying team tried but it was to no avail and that has probably hurt Kim’s legacy in some eyes but questionable how well anyone could have done given the brutal environment facing ME/CFS and other similar disorders at the federal level. (FM, interstitial cystitis, TMD, etc., all get horrible funding; FM gets less funding per person than ME/CFS – and that’s after three FDA approved drugs.)
Mention the CAA on the Forums and you were probably going to get a very heated response. The CAA’s takedown of Dr. Reeves, which was one of the most aggressive acts of advocacy I’ve seen in this community, was greeted by one advocate as a cynical move to recapture the chronic fatigue syndrome communities hearts. The hiring of Suzanne Vernon from the CDC, in retrospect, one of Kim’s major accomplishments, even five years later was still being questioned. The CAA was right on XMRV but wrong not to pretend it didn’t have doubts and so got lambasted by the ME/CFS community for their tepid response to the discovery…(Sometimes you can’t win for losing..)
Of course there were stumbles; the CAA’s embrace of the CDC Toolkit being the biggest and most painful one. The CAA’s been knocked for not working with smaller organizations and ‘protecting their brand’ and there’s probably some truth to that. They were late to embrace the ME/CFS label (they finally have). You can also be right in this community and still be wrong – as the CAA was with its conservative and rather tepid (and ultimately correct response to the XMRV finding.
Staying Alive
The CAA has got its vociferous critics but its also got lots of supporters – just check out its very popular Facebook page, its ability to rally its supporters to support its probject and its budget; its a unique organization in the ME/CFS community and the fact that its still alive and kicking after twenty-five years of advocating for a controversial disease is pretty darn good. During the recession, the CAA bent where other non-profits broke (National Fibromyalgia Association) and came out of it relatively whole – a real achievement, and then they transitioned to the world of social networking by building the most popular ME/CFS Facebook site.
Turnaround
The CAA has always funded good research but I felt they found their niche with their focus on putting Research1st. Kim McCleary is a science wonk – she can talk research with anyone and I imagine she’ll be reading ME/CFS research papers as long as she’s reading, and my guess is that she loved the new focus. The Light’s gene expression work, the repeat exercise tests, the current EBV work by Glazer, Broderick’s fantastic data mining studies, the exciting brain lactate findings, etc. all were at least partially birthed in the CAA’s research program.
With the Patient Registry and Biobank starting to reap dividends (three studies are underway now – all looking at the same patients through different lens – talk about opportunities for cross-group collaboration), the CAA beginning a partnership to approve a drug for ME/CFS and the Drug Repurposing, microbiome and Logosomix studies ending up these are exciting times for the CAA. I find ironic that she’s leaving right in the midst of all this. I wonder if she does as well.
I wasn’t always happy with the CAA; early on I stopped supporting the organization because of all the fluff they were putting out on the Chronicle (it improved greatly later on) and I, too, wanted more advocacy protests. I would have loved some street protests but they were always doing something interesting particularly on the research end and in the last couple of years, in particular, I’ve found their work very exciting.
On a personal level I always looked forward to meeting with Kim at CFSAC meetings and ME/CFS conferences. Always the professional who rarely responded to criticism, viewers never got a sense of the woman who choked up watching patients give testimony, who had a wicked sense of humor or the hard worker who could talk fluently on virtually any subject on ME/CFS. The CAA was always more than a job for her; her husbands mother, Wilhelmina Jenkins, has had a severe case of ME/CFS for decades; this disorder is part of her family.
Kim McCleary’s Good-bye
I will definitely miss her. .
A wonderful write up, Cort, of an extraordinary woman. Thank you, Kim, thank you.
Thanks Jeanie – truly a moment of demarcation. I will miss Kim – I hope she’s remains engaged. I think the CAA is in good shape actually…the ground has been set well for the next CEO…only the second in the organizations history..
Awwww, that’s sad. You can see how much a part of her life this has been. It’s so hard for her to make these changes and you can sense the loss that she already feels. I hope she will have a good “next chapter” in her life and that it will be just as fulfilling and enjoyable as what she has done in the past. She should know that others appreciate what she has done and that her efforts have not gone un-noticed and are not in vain.
Issie
I hear you, Cort, oof is right. I feel like I got kicked in the stomach. While I was actually opposed to Kim for a period of time when I first started getting the lay of the land in regards to advocacy, I now think that Kim McCleary has been an extremely valuable asset to the patient community and will be sorely missed.
As to some of the points in your article, I think the CAA would be absolutely right to ‘protect their brand’ simply because they are one of the most professional patient orgs on the planet. As a good example of this, remember the full page scare ad on XMRV that was published in some big newspaper that was signed by various smaller ME/CFS groups? Even then there was big concern as to whether XMRV was a valid finding and IMO the groups that signed that ad showed that they lacked professionalism. If you want to be taken seriously you can’t do shit like that because no one will listen to you if you do.
I also think that most of the most vociferous criticisms that get constantly rehashed about the CAA are just plain ignorant and stupid, which is no surprise since a lot of these criticisms come from the same people who went full on fanatical about XMRV up until the very end and made us all look bad as a result.
For example, the CAA is constantly criticized for the state of affairs that ME/CFS is in in the US, with some going so far as to say that the CAA is in cahoots with the NIH/CDC and that the CAA ‘wants to keep patients sick so that the leadership can keep their jobs’, etc. However the glaring, gaping, enormous problem with this scenario is that ME/CFS isn’t taken seriously ANYWHERE IN THE WORLD. Nowhere- not Australia, England, Canada, Europe, Scandanavia, South America, anywhere. Why should the CAA be singled out for criticism due to ME/CFS not being taken seriously in the US when no other country in the world takes it seriously either? Does this mean that every patient advocacy group in the entire world is somehow colluding to keep patients sick? This would also mean that every one of the CAA’s many past and/or present Board of Directors, Scientific Advisors, etc, (many of whom have spent their entire adult lives advocating for, researching and/or taking care of patients) would also either totally incompetant not to notice and/or in cahoots by noticing but not saying anything. Such a scenario is absolutely ridiculous and stupid.
Furthermore, what doesn’t get taken into consideration in the above scenario is that even if a treatment were found tomorrow there would still need to be a patient org to advocate for research funding, patient care, etc, so to say that the CAA wants to keep patients sick makes no sense whatsoever since there would still need to be a CAA even if a treatment(s) existed! There are all kinds of treatments for all kinds of diseases yet there still are patient advocacy groups for these diseases as well. The utter stupidity of some of the most common arguments against the CAA are just mind-boggling.
As for why the CAA doesn’t jump on and support every little bandwagon, you can’t expend political capitol on piddly bullshit that doesn’t amount to anything.
Man, I read some of the stuff that gets rehashed about the CAA and my eyes roll. One thing that I think people don’t take into consideration is that it would be hard to even explain to someone just how fucked the situation is for ME/CFS patients, how the CDC itself is one of the biggest obsticles to improvement, etc, and to lose someone who not only knows the score but has actually lived it themself is going to be a big loss to the patient community. Who knows what kind of chump the CAA might hire as a replacement for Kim and who thinks that everything is going to be fine and dandy, that things are going to work the way the should as they do with other diseases (relatively at least), who thinks that the people who are supposed to know what they are talking about actually know what they are talking about, who doesn’t know who the players are and who should and should not be trusted, etc. This could be a big setback for the patient community, I hope they find someone good.
That said, I hope Kim writes her memoirs as I bet she knows some of the best dirt around!
Thanks John, Hey, I think being the CEO of the CAA is probably one of the toughest gigs in town. You’re stuck between a large population that’s not getting much help, has a lot of needs and the feds who really aren’t interesting in providing real help..
Sometimes I’ve thought the CAA – the gorilla in the room, so to speak, of ME/CFS organizations – has simply been the target of everyone’s frustrations. They were so visible its was kind of hard to get that they were never a big organization, they had what – six or seven employees?
You have a good point about Kim’s replacement; her experience will be hard to beat – I really can’t tell you how informed she is on just about every topic; it’s actually a little upsetting a times:). Unless they get somebody internally I imagine they’ll have to go outside the field and while they’ll bring a fresh perspective they’ll lose all that experience.
After listening to Suzanne Vernon’s recent webinar I think the CAA is on the cusp of something; I think the pieces they’ve put in place over the past four or five years are starting to come together and the future looks bright at least to me. I’m kind of PO’ed that Kim is going to miss what I hope and believe are going to be some good times.
Excellent review of Kim’s contributions and all the challenges she faced, always with a smile.
It is hard to imagine who will replace her, with her steady vision, active imagination for new steps to take, persistent drive, and perhaps a deep understanding that the disease itself makes normally (pre disease) civilized people act a bit uncivilized when they must face yet another less.
Healthy people who dedicate their lives to helping very ill people are so very rare.
Personally, I think the assessment is overly rosy. Don’t forget Ms. McCleary is well compensated for her efforts. I think I saw in the neighborhood of $180K. I think it’s highly appropriate to take a much more critical assessment of her long tenure. Hourly workers are under far more performance scrutiny these days.
I could go on and on but “partnering” with the CDC to “educate” MDs on what “CFS” is was not great use of time or resources. It crushed CAA’s credibility in being overly chummy with the “Dear Sir” agency that literally laughs at us behind our backs.
The CAA has a lot of highly paid consultants doing PR, recruiting and other work. Being “professional” and “working hard” are good qualities but not worthy of a huge salary.
IMO, the CAA strategy of playing footsie with the CDC and trying to stay chummy with them and other government officials was not a good one. What was the result? Less funding and an illness that is still a “mysterious” condition defined by being tired for 6 months and 4 random and vague symptoms.
It will be tough to move forward without taking a careful look at the effectiveness of past efforts. Now is the time for that.
I’m sure the CAA will do a complete overview of their programs as they find somebody new to lead them. I agree, in retrospect, that the CAA made a misstep with their partnership with the CDC; they should have required that the Toolkit be redone (if that was possible) however the media program was really good and it did get across the idea that this is a serious disorder.
Ultimately the CAA did not stay chummy with the CDC; after their research indicated the CDC has misspent over $12 million dollars they called for new leadership….and a year or so later he was gone. It was a very aggressive effort and because it was backed up by facts, it ultimately, worked I think. Ironically they were derailed for a time by a review by ME/CFS professionals with Dr. Komaroff that said the CDC was doing a good job!
http://phoenixrising.me/archives/600
Cort, do you have a link to this report praising CDC, please?
Justin
The CAA did a report indicating that the CDC had misspent millions of dollars in funding. They used that to call for Reeves to go. The Komaroff team report praised the CDC. I have no idea where that is.
Here’s my blog on that; all the data is from the CAA – http://phoenixrising.me/archives/600
CAA and the CDC: http://phoenixrising.me/archives/553 / http://phoenixrising.me/archives/498
It would be really nice to see that Komaroff report. Please post/link if you find it. As a patient of Komaroff, I can say he is not all that forthcoming. It’s shocking that anyone who really wants to make progress would say the CDC has been effective. Komaroff is a bit of an enigma in that he does say often that it is a serious disease but like the CDC he is more than happy to bury it in Fukuda and throw his patients to the “sharks”.
Do you remember if this report was initiated or published by any particular organization?
I agree, Floyd!
A former longtime CDC official has recently joined the CAA’s Board. So, while CAA has certainly improved over the past couple of years, I am not hopeful that the substantial turnaround that is needed will be accomplished by whoever will be the new CEO.
I think, as patients, we should make it crystal clear to CAA’s Board once again that someone like Ms. McCleary is unacceptable and also that the salaries for officers should be reduced significantly.
Who’s the CDC Board member on CAA? I don’t see anyone.
“Michael Greenwell of Atlanta, GA:
Michael is an expert in communications and public health. Currently Vice President of ICF International, he served for 14 years as the communications director for two large centers within CDC: the National Center for Chronic Disease Prevention and Health Promotion and the Agency for Toxic Substances and Disease Registry. Michael serves on numerous boards including the American Heart Association and the Sudden Cardiac Arrest Association, and has served as a senior consultant to the Arthritis Foundation, the CFIDS Association and the Interstitial Cystitis Association.”
http://www.research1st.com/2013/03/06/new-2013-directors/
Thanks Justin, For my part I wouldn’t reject someone because they worked for the CDC. I’ve talked to CFS researchers at the CDC – they all seem genuinely interested in this disorder and Suzanne Vernon’s – also from the CDC – has done a great job, in my opinion, at the CAA. For another thing the CDC is an immense multi-billion dollar organization only a very, very, very small part of which has anything to do with ME/CFS. I imagine if you had another disorder you might be very happy with them.
Look at what this guy brings; he’s a vice president of a corporation, he was communications directer for two centers at the CDC which means he’s probably working on things like AID’s and Diabetes and he’s already on the Board of the American Heart Association (can you guess that Board is packed with talent) and he’s been a senior consultant to the Arthritis Foundation and ICA.
With the experience this guy brings I would snatch this guy up in a second particularly since the CAA or any non-profit can always use help with communication.
True. See marc iversons resignation letter
Kim and co had big salaries out of the sick
Wouldn’t give them a cent
All I can say is that Komaroff has been very helpful and he’s very conservative in some ways. He’s a Harvard professor advocating for ME/CFS which is great and can’t have been easy. Twice he’s managed to show up and do things that hurt us I believe. The CAA made a great case against the CDC at the CFSAC, the entire CFSAC board backed Dr. Reeves removal and at that very moment out came that report of which Komaroff was an author basically stating the CDC was doing a fine job. The CDC waved that around and all the momentum stopped. Dr. Reeves was, however, removed later on when the Obama administration came in.
Komaroff was also the only ME/CFS expert on the Ampligen panel to vote against the drug on every question including one – was Ampligen safe enough to market – which the panel voted 8-5 yes. A Komaroff yes vote a several questions could have made a big difference. I think Komaroff to some extent is out of touch.
I had heard Komaroff was a “consultant” to the Ampligen manufacturer at one point. Though he doesn’t have a current contract with them there are other potential conflicts of interest that could be present. It doesn’t pass the “smell” test. I hope somebody did a deep dive on Komaroff’s past with this company.
Komaroff has and continues to be very focused on HHV-6. My guess is that he might believe the HHV-6 has gotten into the brain and caused damage to the ANS and other areas of the brain – at least with some patients.
The CDC report with Komaroff was an outside report initiated by the CDC; ie they asked for an external group to assess how they were doing. I imagine that it’s somewhere on the CDC website.
I remember that external peer review, I think it was set up by the CDC with suggestions by the CFSAC (and maybe others) as to who should be on it. Peter White was one of the reviewers and I think at the time it seemed like it was basically written by him and signed off by the other reviewers, but I can’t remember if that was ever confirmed or not. The review says that CDC should look into CBT and GET and should consider working with groups who do CBT/GET research, which to me sounds like a shameless self-plug by White, and also around this time Bill Reeves was saying at CFSAC meetings that CDC was thinking about producing national guidelines and was considering working with groups who had also produced such guidelines, which also came off as a reference to P. White and the NICE guidelines, so it seems like a big conflict of interest for White to have been a reviewer. In fact P. White put CDC down as a conflict of interest in his own CoI statement when he was on the UK MRC ME/CFS Expert Panel around this time. I believe P. White was also chosen by the CDC itself to be on the panel and was not suggested by CFSAC or anyone else.
Here’s the review itself- http://www.mediafire.com/?vh47b3ps0kpvpjc#!
Here’s the CDC’s summary of the review- http://www.cdc.gov/cfs/programs/cdc_research/external_peer_review.html
Here’s a link to Cort’s write up at the time the review was published, including writing about the CAA’s criticisms of the CDC which had just occured at the CFSAC and as a result of the CDC CFS Research Program publishing its lame ass 5 year plan- http://phoenixrising.me/folder/newsnewsletter/news-2/phoenix-rising-a-chronic-fatigue-syndrome-mecfs-newsletter-dec-2008cfids-association-of-america-cdc-round-ii-by-cort-johnson
And if you think the CAA/Kim McCleary hasn’t been criticial of the CDC, check out these docs, which to me are basically some of the best criticisms of the CDC since Osler’s Web, they’re really compelling-
http://www.cfids.org/temp/research-plan-response.pdf
http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf
http://www.cfids.org/cfidslink/2009/070108.asp
Thanks John
This helps dispel the myth lingered even after the CAA’s strong critiques of the CDC that they were lock in step with them. Yes, the CAA did work with the CDC for a time and then they turned around and severely criticized them.
I also take issue with the idea that the CDC or Bill Reeves were or are these kind of homogeneous figures. Bill Reeves did some good research and he did some research that wasn’t helpful. The CDC engaged in the open-ended pharmacogenomics studies before they looked at early life sexual abuse. They gave the entire Pharmacogenomics data set to the CAMDA project and said make of it what you will. Anything could have popped out of that work and several immune findings, sadly never followed up on, did. That does not fit the picture of an organization devoted to classifying ME/CFS as a psychological disorder. That’s just not true. The CDC took a number of different focuses over time and the psychological one was one of those.
Now Dr. Unger is taking the CDC in a much more promising direction with her multicenter physician studies. She actually told the CAA that we need to find a way to get clinician intuition into plain view! (The CAA created a project to do that)…That’s really groundbreaking stuff…
The point is that the CDC and the CAA are doing very different things now and both, in their own ways, are heading in the right direction, I think.
It kind of seems to me that there were/are people at the CDC CFS Research Program who know what they are talking about and also people who have their heads up their asses and that these two groups kind of form competing cliques. For instance you would often see the same names on the good exercise testing papers and then other names on the bs psychobabble papers. The problem was that Bill Reeves fell into the latter category so that’s the way the overall direction of the program was headed IMO, especially after Suzanne Vernon left.
I think I even remember reading somewhere (maybe in the External Review?) that Bill Reeves was actually praised for ‘not hesitating in making the final call’ or something to that effect when there was disagreement within the program. To me that’s bs and is not a good way to run an organization; you can’t just flip a coin or whatever when it’s time to go home when there is substantial disagreement about what to do in regards to a given situation. I even think I remember hearing and/or reading somewhere that unanimous decisions (where everyone in the group has veto power) were becoming avant garde in respect to group decision making/teamwork because even if everyone in a group except one person agreed, that one person who disagreed might have seen/understood something that the others in the group overlooked. From what I understand about unanimous teamwork, when someone vetos an idea its either up to the group to convince that person to change their view or up to the person doing the vetoing to get the group to change its views. It’s kind of daunting to think about but supposedly it’s a better way of making decisions.
Both lack consistency and anything close to resembling a plan. I’d like to see a lot more than various and sundry studies that seem to have no relationship with one another.
re: CDC – No leadership whatsoever if one year you are doing the cause of CFS is child beatings and the next you are doing genomic testing. DSM 5 would qualify that as ADHD or something. I qualify that as government waste.
I was so despondent last December when I heard the reports, and later interviewed other M.E. physicians who were there or knew Dr. Komaroff. As a person whose life was literally saved by Ampligen, I couldn’t understand why this rogue individual would say such garbage. Komaroff is the quintessential example of ego and arrogance on grand display despite ignorance. He was hostile against Hemispherx at that meeting, and took liberties to critique that which he knows nothing about. See: http://forums.phoenixrising.me/index.php?threads/i-have-a-plane-to-catch.21057/
The other Doctors were astounded at this man’s commentary. He has, unlike Lapp and Peterson and others, little experience with Ampligen in practice, so at worst, he should have kept his mouth shut or abstained from that vote. By waving his over rated “Harvard” credentials around, his voice won the day and the headlines. As a result, the patient community suffered. In my view, his immature behavior at that meeting and his insane vote is because of envy or pride – he was NOT given the green light by Hemispherx to provide patients with Ampligen and be part of the trial.; even though he was an Advisor to Hemispherx 10 years ago. There is a reason that Hemispherx chose people like Drs. Lapp, Peterson, Bateman, Enlander etc. to do the current trials and why they did not award same to this self absorbed know it all.
The Hippocratic oath as well as the more modern Declaration of Geneva have words that all physicians learn in med school, including “In every house where I come I will enter only for the good of my patients.” In my view, Komaroff violated his primary responsibility, and put his ego ahead of patients.
I invite Doctor Komaroff to Charlotte to meet me at the Hunter Hopkins Center any Monday or Thursday of any week, where he can interview me and other patients who have gotten or are getting measurable, bonafide improvement from Ampligen. I will even cover the cost of the flight. I will use every measure of gentle persuasion and diplomacy to show him the error of his ways.
But diplomacy is often the ability to say “nice doggie” until you find a rock.
If he turns out to be as egomaniacal and insensitive to patients as he was last December, then he’ll see a different side of Kelvin Lord. I will tell him to his face what a selfish asshole he really is, and will use every resource to flood the Internet with the truth about him.
That’s from someone who benefited tremendously from Ampligen. Dr. Komaroff’s votes were very unfortunate. It was astonishing to me that he was one of I think four or five members of the panel who voted no every time. None of his fellow voters had any history with ME/CFS and of, course, he is steeped in it. Komaroff must have or should have, known that he was conceivably voting for the death knell for Ampligen but he was giving no breaks for Ampligen at all. He might as well have been from Mars for all his understanding of ME/CFS patients plight.
In the midst of it, rather astonished at the way he was voting, I turned to Kim McCleary and asked “Is he going to vote no every time?” and she said, “yes”.
Some patients including Bob Miller’s wife, Courtney had a very frank discussion with him afterwards.
Too bad we didn’t have a different representative on the panel .
You can always tell a Harvard Man but you can’t tell him much!
I think the cynicism directed at the CAA is well deserved. Their big effort to distribute pamphlets was nothing more than an expensive endorsement of the kind of bias demonstrated on the CDC website. It was actually worse than nothing. It was like prescribing medication that is known to be ineffective or harmful. The fact that they “got information out” ignores the kind of damage this bias can cause. Also, the CAA did not lose their credibility overnight, and they should not expect to win back respect overnight either.
As for Unger being a breath of fresh air, I already caught her in two lies as CFSAC meetings. The first was when she said the lack of balanced coverage at the CDC website was because they only see it as a place to post about their own research. This is the same lie Reeves told at an earlier CFSAC meeting. And the truth is that they cite and utilize results from research other than their own. For example, research done in England using the Oxford Criteria, which is not even real CFS. The second lie she told was when she said the CDC clarifies to doctors that the empirical definition is for research and to not be taken literally for clinical use. There is no such statement in the PDF tool kit.
As for her multi-site study, I’d like to know which sites they are. Because if they are using any sites that don’t study real CFS, then they are stacking the deck again. And based on Unger’s willingness to lie, I see her as more interested in making the CDC come out smelling like a rose, and less interested in treating this illness fairly..
Speaking to the multi-site study the physicians are Peterson, Klimas, Bateman, Lapp, Podell, I think and a couple more of their ilk. That should allay your fears with regard to the that study.