2009 In Review

January 1, 2010

Posted by Cort Johnson

EVENTS

  • Biggest Event – what else? XMRV takes the spotlight as no research finding has before, retrovirologists across the world clamor for samples, worry mounts about a tainted blood supply, Hilary Johnson blows into the New York Times Op Ed section, and patients gasp and cross their fingers in hopes that it will all work out. See XMRV Information Center
  • Most Surprising Event – Demonstrating that it can, in fact, be done, Mike Dessin’s near complete recovery from near death, after using a novel treatment approach manages to trump even XMRV as the most sheerly shocking event of the year.

XMRV

  • Smartest and Luckiest Research Team – WPI researchers gloam onto XMRV shortly before their reason for doing so, the RNase L dysfunction present, is disproven as a factor in XMRV associated prostate cancers. Preliminary results suggest RNase L plays no role in XMRV infection in ME/CFS. For once the chronic fatigue syndrome community gets lucky.
  • Biggest Disappointment - A month or so after rumors begin that XMRV is actually the DeFreitas retrovirus the WPI announces that it is not, temporarily deflating an entire community with visions of retribution for years of suffering, lawsuits, and the federal research community with eggs, tomatoes, dirt clods and all manners of other unfortunate substances on its face.
  • Best Stand Taken – theWhittemore Peterson Institute goes toe to toe with the most prestigious research journal in the world as they refuse to give into Science’s demands that ‘CFS’ not be mentioned in the XMRV paper.
  • Least Enthusiastic Response to XMRV – the CFIDS Association gets the facts right but misses on the enthusiasm part as patients hammer the organization for their rather tepid response to the most exciting event in ME/CFS history. A besieged organization goes on to apologize. Meanwhile their Science Director service Dr. Vernon joins Dr. Mikovits and others on the DHHS panel to oversee the federal research effort on XMRV.
  • Poorest Response to the XMRV finding – Dr. Hyde and Dr. Marshall blast the XMRV finding but Dr. Hyde takes the prize for inferring that it’s really all about the money.

The Feds, CDC and NIH

  • Most Typical Federal Response – after years of expecting little or nothing from the NIH on CFS the NIH representative on CFS – Dr. Eleanor Hanna – once again delivers little or nothing. When asked what the CFS Research program is doing about XMRV now she replies they are working on the 2011 budget.
  • Best Indication That the Dysfunction in the NIH program Rivals That of the CDC – occurs when the CFIDS Association tries to take advantage of the Obama Stimulus Package only to find that the only NIH employee working on CFS, Dr. Hanna, has not gone to the trouble to create a category for them. – See   Teflon Woman
  • Most Unprofessional Behavior – hardly has the ink began to dry on the XMRV Science paper before Dr. Reeves states he doesn’t think that the CDC (a lead agency in the effort to find the virus) will find it. He also manages to take Science to task for publishing what he feels was an unworthy papreeveser. If listening closely one can almost hear CDC administrators grind their teeth the as their chief CFS researcher somehow does it again.
  • Quickest Promise Reneged On - after committing the CDC to more collaboration and more interaction with the research community in May Dr. Reeves scotches a promised International meeting that summer and then refuses to send any of his researchers to the three-day CFS researcher brainstorming session at Banbury.
  • Most Inadequate Response – after the CAA documents the CDC spent millions of dollars simply enrolling patients into a study, and the IACFS/ME  and CFSAC call for new leadership and a revamped program, the CDC responds by……..not responding – - –  leading patients to conclude that either they’re a) extremely arrogant b) don’t really care or c) simply don’t know what to say, (or all three.)
  • Most Out of Touch Response – the CDC publicly blames the CFIDS Association of America for engineering the virulent anti-CDC messages at the public review session for the CDC’s five year plan suggesting that if it was not for the CAA’s efforts all would be simply rosy.
  • Most Inexplicable Research Project - after years of ignoring CBT and after many studies on the subject have been done, the CDC inexplicably decides to do its own CBT study.

Advocacy

  • Best New ME/CFS Spokesman - Dr. Donnica Moore proves to be an articulate spokesman for the disease when she appears on Good Morning America and the Dr. Oz show. The CFIDS Association of America nominates her for a spot on the federal advisory committee on CFS (the CFSAC).
  • Most Effective Editorial – in a stunning event Hillary Johnson’s editorial on CFS, XMRV and the CDC dominates the op-ed page of the New York Times
  • Most Unlikely Friend – the ME/CFS Community finds a sometimes stern but powerful friend in Dr. Wanda Jones as she takes over leadership of the CFSAC Committee. Dr. Jones helps organize a sometimes unruly committee, starts videotaping the meetings and then, in a coup de grace, at the last minute corrals the top retrovirologist in the country (Dr. Coffin) and moves the next session to the big room where three cameras capture, in vivid video, Dr. Peterson, Dr. Coffin , Annette Whittemore and others, speak on XMRV.
  • Most Graceful Move – With Dr. Wanda Jones and Annette Whittemore going to toe to toe over whether Annette should be allowed to speak, Dr. Oleske, the CFSAC chair, states he will take the consequences of shattering the federal rules of order and gives Annette permission to speak.
  • Most Mangled Association - Hillary Johnson proclaims “the CDC is the CAA : The CAA is the CDC” after the CAA uses its congressional contacts to expose financial misconduct at the agency, calls for new leadership, and for the CFS effort to be moved to an entirely new part of the agency.
  • Second Most Mangled Association – Hillary Johnson asserts that with the arrival of former CDC lab chief, Dr. Suzanne Vernon, at the CFIDS Association, that ‘CDC and CAA DNA’  have become intertwined. Meanwhile Dr. Vernon accepts the OFFER Research Excellence Award to a standing ovation, goes on to produce a research program that bears no resemblance to the CDC’s research program, and begins to build an International Research Network. She also joins the board of the IACFS/ME – thus intermingling her DNA there as well.
  • Best Return From the Dead – after many years of playing little role in the major issues confronting the ME/CFS Research Community the IACFS/ME snaps to life under the directorship of Dr. Fred Freidberg, as it vigorously argues for new leadership and major changes at the CDC.
  • Most Damaging Document – The four members of the External Review Panel turn in a mostly positive review of the CDC program thus scotching the CFIDS Associations efforts for major change. The CDC demonstrates its objectivity in the matter by never referring to the damaging findings from the CFIDS Association extensive report report while hailing the External Review Committee’s report at every turn.
  • Worst Timing: the IACFS/ME and CFSAC forcefully insert themselves into the action regarding the CDC but miss their opportunity to present a united force with the CAA six months earlier. With the CDC inoculated against change by the External Review Report the agency continues on with business as usual.
  • Biggest Wrench Thrown Into a Project – after a complete Web redesign and a celebrity spokesman lined up and just weeks before the Fair Name Campaign is due to relaunch its effort to change the name of this disorder to ME/CFS, XMRV and XAND shows up, throwing the campaign into turmoil.

Research

  • Most Out of the Blue Finding – Dr. Light draws gasps at the IACFS/ME Conference in Reno as he presents findings suggesting that the receptors that track muscle damage in the body are WAY, WAY over-activated in ME/CFS patients. He proposes that the fatigue, pain, etc. in ME/CFS are due to the central nervous system messages mistakenly telling the body to shut down to prevent more muscle damage.
  • Worst Research Finding – WPI researchers document a lymphoma outbreak in Dr. Peterson’s patients offering a sad coda to decades of suffering by Incline Village and other residents. Demonstrating once again that very small numbers of people with the right kind of illness trump very large numbers of people with the wrong kind of illness, the National Cancer Institute jumps on board, starting the process that ultimately leads to the discovery of XMRV.
  • Biggest ‘Big Picture’ AttemptProving once again that she really is a Dr. Suzanne Vernon Research Direction of the CFIDS Associationbig picture type of person Dr. Suzanne Vernon and the CFIDS Association start the beginnings of an International Research Network focused on collaboration, sample sharing, data sharing, a secure Researcher Wiki and a standardized testing approach.
  • Most Amazing Effort by a Layman – Marian Lemle, the mother of a child with ME/CFS, bursts into the prominence after Dr. De Meirleir proclaims that her hydrogen sulfide theory explains ME/CFS!
  • Best Homecoming – after over 25 years and just 6 months before the WPI Institute announces the biggest find in ME/CFS in decades the ME/CFS Community ‘comes home’ to the place that put CFS on the map in the 1980’s. With Incline Village just a drive away the Reno IACFS/ME Conference, fittingly features, at times, emotionally, Dr. Peterson and the Whittemore’s.
  • Biggest Opportunity Missed – A charity fundraiser apparently precludes anybody from the Whittemore Peterson Institute from attending the three day researcher brainstorming session at the Banbury Conference thus nixing an opportunity for CFS researchers to get an early jump on the XMRV action

Treatment

  • Best New Treatment – Dr. John Chia dumps the sometimes toxic drug Interferon in favor of Oxymatrine, a Chinese herb that has antiviral and other properties, and reports better results. He begins offering a pure form of it from China.
  • Most Creative New Treatment – the always interesting Dr. Cheney digs into malaria treatments to find Artesunate, a drug that has both redox and antiviral properties. He claims Artesunate has increased his treatment efficacy greatly.
  • Most Abrupt Treatment Turnaround - after examining the results of his ‘event terrain’ scans of his echocardiograph Dr. Cheney proclaims that whey protein powder, D-Ribose, omega-3 fatty acids, methylation supplements and other commonly used supplements are actually harmful to ME/CFS patients.
  • Best Patient Treatment Trial - 130 people in the New Day Group on the Phoenix Rising Forums watch five patients as they undergo the treatment that returned Mike Dessin to health -

Internet

  • Most (Predictably) Disappointing New Website - after tantalizing an always information hungry ME/CFS community about his new website and newsletter for months Dr. Cheney ends up charging a hefty enough fee that only the wealthier amongst us (once again) will benefit.
  • Best New Information Source – For those that can afford it Dr. Cheney delivers the goods providing tantalizing articles on a variety of topics.
  • Strongest Year on the Internet – the ME/CFS Community makes its best use of the Internet yet with patients flocking to join new Facebook sites by the CFIDS Association and the Whittemore Peterson Institute, with ME/CFSCommunity and the Phoenix Rising Forums growing by leaps and bounds and with numerous bloggers entering the field.

22 comments

{ 22 comments… read them below or add one }

Anne January 2, 2010 at 1:29 pm

A great summary, Cort, thank you. I do think, however, your language in referring to Hilary Johnson is unfortunate. You may disagree violently with her statements, but saying she “hisses” goes way over the line; it’s demeaning and turns a fellow CFS sufferer into a caricature. And, while I’m sure that you mean nothing by attaching the word “hiss” to a woman, it does carry some serious cultural baggage,; it’s deeply offensive, and mars an otherwise terrific piece.

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admin January 2, 2010 at 1:56 pm

Thanks Anne – its hard to get away from using that kind of language when Hillary uses such strongly emotive language herself and uses such strong statements (ie CAA is CDC). I changed hisses to proclaims – a better choice of words. Thanks

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Anne January 2, 2010 at 8:00 pm

Thank you, Cort.

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Cort January 3, 2010 at 1:13 pm

I would argue though that Hillary leaves herself open to caricature when she says things like “CAA is the CDC, CDC is the CAA”. You can have lots of discussions about whether CFIDS Association should have been tougher on the CDC or should or shouldn’t be entering into media contracts with federal agencies but to say that the “CDC is the CAA” after the CFIDS Association got senators and congressmen to open up the CDC’s files and after they repeatedly called for new leadership and a complete overhaul of the program suggests that Hillary isn’t interested in being objective anymore. One could say that the CAA has changed – I wouldn’t necessarily say that – but its clear Hillary has not.

Ditto with the CDC and CAA DNA statement. Knocking someone simply because they worked at the CDC- no matter what good works they’ve done over the past two years – and I think most people would agree that Suzanne Vernon has done a lot of good work in the past two years – suggests that Hillary doesn’t really care about good works – which is appalling given how few of them we have. When someone works hard, does good research, facilitates market research and proposes a Research Network that should considerably speed up the pace of research – and then is dismissed simply because of where she came from – that’s a BIG problem.

At least with regards the main characters in Osler’s Web – you got the feeling that you’ve got the whole story. Not now. This is more like McCarthyism CFS style – instead of Red Baiting its CDC baiting. It’s silly, it’s counterproductive for all of us, its ugly and quite frankly I think more people should protest that its happening.

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Sue Jackson January 4, 2010 at 7:06 am

Wow, what a great summary, Cort! I try to follow the latest CFS news, but there were a lot of items on your list that I missed in 2009, so I really appreciated the year-end round-up.

Great work, as usual – thanks!

Sue

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admin January 8, 2010 at 12:16 pm

It was quite a year wasn’t it? The most exciting I can remember. Hopefully next year will be even better.

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Cinda Crawford January 7, 2010 at 9:22 am

Thanks for a great wrapup of 2009. It can be hard for the average person to learn all about CFS and keep up with everything that is going on. I try to help in that endeavor, too, and will post this piece to my website/ blog/ podcast, the Health Matters Show.

Cinda Crawford, host of the Health Matters Show and a former CFS & Fibromyalgia sufferer

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Vickie January 7, 2010 at 9:50 am

Once again, Cort, you seem to lack facts and go on your own idealistic and quite biased agenda. I just received my newsletter from the National CFIDS Foundation yesterday and it did not give any bad reviews about XMRV at all. I don’t know where you get some of your ideas but they are not based on fact. The article, written by their medical committee, did state that two others, long ago, were looking at types of retroviruses linked to this illness. Their article was completely factual and gave a long list of references. Where do you get your own information? And how did you get an earlier copy of the only response I’ve seen them give on this work?

Vickee

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admin January 8, 2010 at 12:15 pm

I got it from people on the Phoenix Rising Forums who reported that they’d trashed the findings. I should have made sure of it but since it fit their general pattern I’ll take it out until I can verify it. My apologies to them if they were referred to incorrectly.

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Kathy January 18, 2010 at 4:20 pm

Really good summary! However I have to take exception to the “Poorest Response to XMRV Finding”.

Dr. Teitelbaum’s “it’s just another virus” post ( http://tiny.cc/xhQtl ) was definitely in the running. Honorable mention? Or does he even qualify to be nominated?

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admin January 18, 2010 at 4:50 pm

Good point :) I forgot to mention the

*Most amazing production from a layman: Marian Lemle’s creation of the Hydrogen Sulfide hypothesis that Dr De Meirleir brought to everyone’s attention. Marian is very well educated but not in research!

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meghan shannon January 23, 2010 at 3:23 pm

Dr. Teitelbaum’s “it’s just another virus”
Yes he is not even close to the retro virus work that is the underlying problem for a lot of disease processes especially ME or as he has studied CFS ( his CFS patients are not clear cut and do not follow the Canadian Definition nor others
He never has

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meghan shannon January 23, 2010 at 3:28 pm

“Once again, Cort, you seem to lack facts and go on your own idealistic and quite biased agenda. I just received my newsletter from the ”
I

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admin January 24, 2010 at 11:52 am

????? I thought it was pretty heavy on facts actually.

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John Anderson January 24, 2010 at 5:43 am

Sadly an agenda of the CAA can do no wrong, yet everyone else can see it. Isn’t this the same Cort that unbelievably called Reeves researcher of the year a few years ago? So many reasons to doubt your judgment and underlying motives.

Best spanner thrown in the works was putting a stop to this madness: Biggest Wrench Thrown Into a Project – after a complete Web redesign and a celebrity spokesman lined up and just weeks before the Fair Name Campaign is due to relaunch its effort to change the name of this disorder to ME/CFS, XMRV and XAND shows up, throwing the campaign into turmoil.

Well done WPI for putting a stop to that! A lot of us were in turmoil over this crazy plan to formalise that interim acronym – that you have never fought for ME and never questioned the CFS label, could suggest that you approve of the CDC giving us the worst name they could think of to stigmatize us, and the damage it has done.

Many of us seriously question your real agenda. That is most unfortunate, but you do leave yourself open to such conjecture.

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admin January 24, 2010 at 12:13 pm

Hi John,

Here are my suggestions for what the CFIDS Association could do to improve (posted on ME-CFS Community Center):

  • Communicate, communicate, communicate – be a presence on the Forums
  • Be more provocative in your advocacy efforts. Cast aside some of the professional veneer and be more inflammatory
  • Talk about the negative stuff more; for instance, keep the community aware of NIH and CDC funding levels. Explain what you are trying to do to remedy that even if its not working. The CFS community sense’s something is terribly wrong at the federal approach to CFS but they get a disconnect regarding that with the CAA. This is why so many people are upset at the CAA’s ‘tooting their horn”.
  • Communicate the difficulties at increasing federal funding levels; make patients more of a partner in this regard. Candor as slovakia pointed out is VERY important.
  • Respond to inaccurate postings as quickly as possible; basically defend yourself instead of staying above the fray. Don’t let rumors take hold and turn into concrete. Explain why you are doing what you are doing very clearly. Be very transparent.
  • Create a series of position papers on just where you stand on hot button topics.
  • Keep the focus on the Research and in particular build the Research Network you’re engaged in.
  • Get more interactive on the web; build your own social network – become a place where CFS patients want to go to interact about CFS.
  • Create physician and treatment review sections
  • After digging into the CDC for the last year and a half start digging into the NIH
  • Keep looking for more opportunities like building the Physician Education program
  • If its within your means to build or help build a national network of groups do so.
  • Apparently I don’t believe the CAA can do no wrong and if you’d read my comments more carefully you’d realize that. What I vociferously object to is the idea that the CAA can do no right and many of my comments are in reaction to that. In a more evenhanded conversation that looks both at what the CAA has done right and wrong I would spend less time pointing out their positive actions. But we’re not having that kind of conversation – we’re more in a ‘lets find whats wrong with the CFIDS Association” and in that conversation I feel compelled to point what they’ve done right.

    Its remarkable to me that how unwilling many people are to acknowledge them for the positive things they’ve done and I’ve provided a pretty long list of them several times.. When you find an unwillingness to do that – then you have evidence for an agenda.

    Yes, Reeves and the CDC were a couple of years ago. This was after they’d filled the entire Pharmacogenomics Journal with studies on CFS, their director had proclaimed CFS was a serious and legitimate illness – the first head a major federal agency to do that, the CDC was spending millions of dollars on its first ever media campaign on CFS, the CDC had thrown open their entire database to the CAMDA conference to dig into, they were collaborating with Dr. Klimas and others (yes, including Dr. White), it was funding the Dubbo studies examining which examined for the first time what happens to CFS patients as they come down with an infection…it was a different organization, then. The Pharmacogenomics project was Suzanne Vernon’s baby.

    Now she’s gone, the era of collaboration – such as it was – is over, the CDC is looking at sexual abuse (albeit through a stress response angle), Dr. Reeves has blown enormous amounts of precious money and his research program is going nowhere.

    I don’t know about this talk of an agenda. I work by myself. I get a little money from donations and ads on the site – hardly any reason for me to have an agenda :)

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meghan Shannon January 24, 2010 at 6:57 pm

Cort I responded to your E-mail, NOT to this web site regarding your mixed up writing on Dr. Elaine Defrietas.
Please remove my private e-mail to you.
You placed it on the web page I am reporting you
sincerely meghan shannon

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admin January 25, 2010 at 5:18 pm

I have no idea what you’re talking. I responded to a comment on this blog. I promise you I didn’t move any emails over here. I don’t do that. I doubt it was a very positive one (at least from my standpoint). Tell me which one you want deleted and I’ll do it.

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John Anderson January 24, 2010 at 8:49 pm

Its all political “facts” or spin to be more correct Cort – the Pharmacogenics rort based on Reeves unscientific empirical definition, the worthless physician education program and the pointless CFS awareness campaign – all designed to brand the CFS label and continue the cover up of the truth about ME, and what you get out of that only you know.

Patients have made it clear they want no part of the old order, where their desperate pleas to CFSAC and CDC to recognize ME were always ignored. CAA was part of it all. Their support now goes to the WPI for its well deserved scientific efforts to uncover the cause and do away with CFS, and with the intelligent voice of Hillary Johnson who knows the truth and isn’t afraid to say it.

But you keep batting for the CAA as you do, just don’t expect us to fall for it anymore. We have had enough of the CFS game, its over. The WPI leads the way.

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admin January 25, 2010 at 5:15 pm

the worthless physician education program and the pointless CFS awareness campaign – all designed to brand the CFS label and continue the cover up of the truth about ME, and what you get out of that only you know.

I see, if only we would bring back “ME” the true designation that originated in the UK ….the land of CBT…. where it inspired so many researchers to view this illness as biological entity. Now that’s an idea….After all look at how much it did for ‘ME’ sufferers…..look at the 40 years or so where it had the field to itself and galvanized the research establishment to produce, what…..25 or small 1-3 page papers in obscure journals… If you want to go back to that ‘no research, hidden in the mud’ type of existence – that’s your priviledge I guess.

And no John, the Pharmaocogenomics studies did not use the Empirical definition – they used the old Fukuda definition. And no the media campaign was not designed to brand the word CFS; that word had been branded 20 years earlier; there was certainly no need to brand it more. It was an effort to get the word out that CFS was a serious illness; of course compromises had to be made – but you don’t live in a world of compromise do you?

You’ll have to add Dr. Klimas, Dr. Cheney, Dr. Komaroff, Dr. Bateman, Marc Iverson, Rich Carson, Dr. Jason to your list of the ‘old order’ since all of them unanimously agreed that ‘ME’ whatever its advantages simply would not work as a name.

Somehow I don’t see this as a battle between the WPI and CAA. I don’t think this poor, underserved population needs for its few support institutions to battle amongst each other. I think we need both of them to go forward strongly and I hope they will.

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John Anderson January 25, 2010 at 7:52 pm

If you weren’t so blinkered about your precious CFS you would know the full history of M.E. and what was done to that, and that CFS was invented to wipe history and completely stigmatize sufferers and pollute the research pool.

Its been really super for us since CFS and CBT/GET became the order of the day hasn’t it? Its bad enough that the CDC intended that horrible name to stigmatize, but its worse that patients accept it and then wonder why there is no respect.

Can’t argue with a patriot, its the greatest country on earth and god bless America (too bad everyone else) and aren’t you all just fantastic and absolutely right about everything. You win, CFS is the greatest thing to happen to us.

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admin January 26, 2010 at 6:49 pm

Saying that its better than the good old days when myalgic encephalomyelitis reigned supreme and there was no research on it doesn’t mean that I like the name chronic fatigue syndrome or CFS. There was really very little history of myalgic encephalomyelitis to wipe out unfortunately. I do mean unfortunately. Its very unfortunate that it never got much attention in the research field. When CFS came on board was all too easy for the poorly studied myalgic encephalomyelitis to disappear in the research community. It had almost disappeared anyway.

No one’s saying that chronic fatigue syndrome is a good name. What I’m saying is that going back to myalgic encephalomyelitis at this stage will only make things worse. Actually that’s suggesting that its possible; there is no groundswell of opinion in the research community to call this disease that. The best we can do and the ‘solution’ that I favor is to call it ME/CFS; thereby adding the historical continuity of me and burying the fatigue part of CFS – I think that’s and excellence solution at this point and many ME/CFS professionals are on board.

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