Thursday, February 24, 2011

Training Day

Dog day afternoon at the NIH as Dr. Fred Gill, who hails from the psychoneurotic school of CFS, questions whether CFS is even a disease.  He’s pitted against Dr. Harvey Alter and Dr. Shyh-Ching Lo, who believe in science.

By Charlotte von Salis


Curious to find out the National Institute of Health’s take on CFS these days, I attended the agency’s in-house lecture "Chronic Fatigue Syndrome:  Is there a virus?" on February 22.  One in a series in the NIH’s Demystifying Medicine presentations, the lecturers were the NIH’s Harvey Alter and the FDA’s Dr. Shyh-Ching Lo, co-authors of the 2010 paper "Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy controls.”   

The third speaker was Dr. Fred Gill, a medical doctor and chief of the Internal Medicine Consultation Service at the NIH.  He’s the self-proclaimed protégé of NIH psychobabbler extraordinaire, the late Dr. Stephen Straus.  In addition, Seabiscuit author Laura Hillenbrand is a former patient of Gill’s.

So there I was, the sole member of the public, along with about fifty other NIH attendees.  The good news:  Lo and Alter were terrific.  Lo, in particular, went to great lengths to explain how they carefully ruled out contamination in their study. 

Gill: worse than expected
The bad news:  Gill was even worse than I expected, touting graded exercise therapy as the best treatment for CFS.  That wasn’t terribly surprising, as Gill worked with Stephen Straus and treated Straus's patients. Gill remarked that when he was in private practice, he asked his patients to exercise, and they improved. He noted that many patient advocates feel that exercise exacerbates their symptoms, but he believes exercise is the right treatment for CFS.

Gill gave kudos to the just-released PACE study. "For those of us who've been preaching this [graded exercise therapy],” he said, “it's nice to show this study." Gill was particularly pleased that the same fatigue questionnaires used by the CDC were also used in the PACE study.

Gill’s a big fan of the Centers for Disease Control’s Empirical case definition, AKA the Reeves definition. He loves the—gasp—"excellent" questionnaires that the Reeves definition used, as well as the CDC's 2006 gene study.

The clinician's approach, he said, should mirror the CDC's toolkit recommendations.  Gill’s big on reassuring the patient, avoiding unnecessary tests, avoiding debate over whether it’s psychological, and above all, getting patients to remain active and exercise no matter what.

And the topper?  Gill’s condescending presentation of a CFS patient whom he called Velma (a pseudonym).  A middle-aged former pharmacist, Velma had a sudden CFS onset in 2006.  She reported the classic CFS symptom of suddenly needing to sit down and then lie down.  The next day Velma said she could barely get out of bed to go to the bathroom. Like many patients, she saw several doctors before getting a diagnosis, including physicians at the Mayo Clinic.  (Given the center’s piss-poor track record with CFS, it’s not surprising that they couldn’t find anything wrong.)

Velma admitted to secondary depression.  “It’s depressing when you’re debilitated, but I’m not a depressed person,” she summed up to the audience.  While she’s better than she was five years ago, she still has crashes. She’s not concerned whether CFS is caused by a virus; she just wants to get well.

Velma explained that she takes fludrocortisone— a steroid that treats low blood pressure and neurally mediated hypotension, common autonomic nervous system problems in CFS.  However, the patronizing Gill deemed this drug “useless” for CFS patients—despite that Velma said the drug helps her. 

Velma reported feeling feverish and having swollen lymph glands, but Gill said he found no discernible fever or lymphadenopathy.

Pushing herself to exercise
Velma isn’t the typical CFS patient, as post-exertional crashing isn’t a big issue for her.  She claimed, for instance, that she feels “much better” after she pushes herself to exercise on her “bad days.”  That made Gill smile.

Gill, who looks to be well into his 60s, went through a series of ancient slides from the 1980s. Oh joy—he started by pointing out that CFS was first recognized as neurasthenia by Beard in 1869, and it went downhill from there.  He went through the different names for CFS and selected case definitions (ignoring the Canadian).

Just in case anyone in the audience still thought there might be a real disease buried under the CFS construct, Gill ran through all the studies done by Straus that rebutted any positive treatment trials. Resurrecting his BFF Straus once again, he gave a big thumb’s up to studies done on stress and CFS. As to "pacing,” Gill oddly claimed that “he didn't fully understand pacing.”

Gill concluded his presentation by recommending the CDC's CFS website as well as that of the CFIDS Association of America (CAA). Gill said that he has a high regard for the CAA because he agrees with their views.  So now it’s abundantly clear the kind of scientists whose thinking dovetails with the CAA’s. 

I quickly and loudly called out that for real information, as opposed to misinformation, attendees should check out mcwpa.org and iacfsme.org. I actually got the attention of those present, many of whom copied down the URLs.

Alter’s talk
Alter explained that XMRV and related murine leukemia viruses (MLVs) aren’t yet accepted as human invaders or pathogens by most of the scientific community. (Sad, but true.)  Alter also noted that scientists are still debating whether CFS is physiological or psychological. (Sad, but true.)  He went through his slides, which unfortunately have been taken down from the course material website.  My favorite was the last slide, which indicated that clinical trials with antiretroviral drugs could potentially prove whether XMRV causes CFS.

Alter said that XMRV is a simple retrovirus (compared to the more complex HIV) that could be passed on to progeny.  He didn’t specify whether this infection occurred in utero, during breastfeeding or both.

Infection with XMRV, Alter said, can lead to viremia, which affects the immune and neurological systems.  Alter explained that it made sense to look for XMRV in CFS because many patients have an acute onset that leads to a chronic illness, cluster outbreaks had been reported, concomitant herpes infections are common, and defects in the antiviral RNASE-L pathway have been found. He briefly addressed the XMRV and MLV studies to date, including the negative ones. To my relief, everything he said indicated that he continues to believe CFS is a serious, physiological disease.

Lo’s talk
Lo, too, followed his slide presentation.  I'm kicking myself for not downloading the slides—I was surprised to find them gone from the course material website.  Lo reviewed the methodology and findings in the joint FDA/NIH study in extreme detail (to this non-scientist).

His research team, Lo explained, developed a "highly sensitive assay targeting mitochondria DNA, mouse DNA, that are well-conserved in multiple copies" and used that assay to re-test the positive samples before publishing the study. Lo then brilliantly rebutted the contamination articles.  As to the negative studies, he pointed out that differences in methodology, assays, and sample preparation were among the contributing factors that could explain the disparate results.  He noted that two CDC samples tested positive for MLVs using the FDA assay.

Questions and answers
In the Q & A session that followed the talks, Gill was hopelessly out of touch, invoking the Simon Wessely school of misinformation about CFS, circa 1988, by insisting that the disease is "not common" in children.

During the Q & A, I said that the Canadian Consensus Criteria (CCC) should be used to select patient cohorts and that audience members should read it as well as Dr. Lenny Jason's "Development of a Revised Canadian Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Case Definition.”

I was cut off as I was making a statement rather than asking a question.  So I don't know if what I said will make it to the edited videotape.

I did ask Gill a detailed question (mainly for the audience's benefit) about the Pacific Fatigue Lab's findings with repeat exercise testing, as well as the Lights’ exercise studies in CFS patients.  Both groups of researchers found objective, measurable and significantly abnormal biomarkers that distinguished the sick from the healthy controls after exercise.  Their findings allowed me to bring up post-exertional malaise as the hallmark of CCC-defined patients.

Gill replied that he disagreed with those studies but didn’t explain why.

In the Q & A, I told Gill that I was on the drug Midodrine for neurally mediated hypotension, and that was the only reason I was functional enough to attend the lecture.

Gill’s response was that studies have shown that there’s no orthostatic intolerance in CFS.  Earth to Gill:  Have you not read any of the formidable research by cardiologist Hugh Caulkins’ and pediatrician Peter Rowe’s group at Johns Hopkins?

Harvey Alter spoke again, pointing out that CFS has a viral-like “picture.” 

Gill asked Alter, “Is CFS a real disease—and if so, what’s its etiology?”  

Alter replied cryptically, as if he were the wisest of fortune cookies:  “The answer depends on the effort to find the cause.”

--------------
Charlotte von Salis, an attorney, has lived with ME/CFS for 20 years.

43 comments:

  1. Great Mindy.
    What was Dr Alters Polar Bear slide about ?

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  2. Wow, thank you for this blow by blow report. And thank you Mindy for publishing this.

    I am very happy that I did not have to sit through Gill's presentation as it sounds positively sickening. Sounds like we (the patient community) need to make it very clear to Lipkin and Fauci that Gill is not an acceptable "scientist" to have working on ME/CFS. We need people who are up-to-date on current research. Not gas bags who needed to get out of the way many years ago.

    Does anyone know what Alter and Lo are up to now with respect to HMRVs and ME/CFS research? I pray they are continuing their excellent work. We need them.

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  3. Thank you Mindy for sharing this, and thank you to Charlotte for putting up with a very bad presentation (Gill) and defending our illness and for reporting.

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  4. Thank you for posting this and for all that you do;immense gratitude also to Charlotte for attending and for her incisive comments and questions. I'm glad that some of the attendees were able to take down the URLs of legitimate web sites for further accurate information. It is also noteworthy that Gill likes the CAA site. This affirms the CAAs inability to act on PWCs behalf.

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  5. Wonderful, witty writing by Charlotte von Salis. Thanks, Mindy, for publishing it here.

    Yes, suffer no gas bags. It's unfortunate that the NIH couldn't have found a medical doctor more open-minded and current to inform researchers. Perpetuating prejudices should not be the purpose of these lectures.

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  6. Thanks Charlotte.

    My favourite line from the presenters is “The answer depends on the effort to find the cause.”

    v99

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  7. The slides are still there by the way

    SLIDES: Lo
    http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Lo.htm

    SLIDES: Alter
    http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-%20Alter.htm

    SLIDES: Gill
    http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Gill.htm

    v99

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  8. Thank you for sitting through Gill's presentation and reporting to patients. I was sickened by his condesending tone reading your report and cannot imagine how it was being there to hear it first hand. Kudo's to Alter for counterbalancing the Victorian view of ME presented by Gill! Kudos to you too for speaking up!

    Your report reveals clashing 20th and 21st century views in ME science. We are witnessing a paradigm shift in real time...hang on it is a bumpy ride!

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  9. Sorry this works for Alter

    http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Alter.htm

    v99

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  10. Thanks again, Mindy, as always. Who at NIH chose Gill? We need to target that person.

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  11. Thank you, Charlotte, for making the effort to attend this, and Mindi for the Relay. 'Pretty much re-indicts Fauci and Collins.

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  12. Mindy,

    Thanks for puling back the curtain on how our tax dollars are being put to work against us. Wow!

    As sickening as it is to hear about folk like Gill, we need to in order to fight back. Ironic this is on the same day as the PLoS One spinal fluid article.

    I wondered why Lo, Alter and Gill. Why not Alter or lo, Gill and Komaroff, Klimas or Montoya so that Gill would have been shown to be basing his notion on presumptions and not actually having seem a range of patients?

    Poor "Velma."

    Makes sense out of Kim McCleary's comments on the PACE garbage.

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  13. The answer to who picked Gill is that Tony Fauci is ultimately pulling the strings, and Dr. Fred Gill is just the latest patsy.

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  14. I really think Gill was selected in order to appear to have a "balanced" presentation. It only served to show that he is ignorant, like Stoye, and prejudiced against the devastation of the DD. The NIH had to have him there.

    Thank you so much Charlotte, for your excellent work at this meeting, and Mindy, for being so generously spirited with your blog site. You are both to be commended.

    BRAVO!

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  15. Thanks a lot Charlotte for representing and reporting. Hugely valuable! Patients, including me, emailed him to try to get him to trash the straus garbage and use CCC, but of course that didn't work. i bet they edit the hell out of the video so it is good to hear your report.

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  16. Thank you to Charlotte for going to the talk! Especially since no one is currently able to view it (will this be another episode of gov't suppression ala Alter's paper?).

    And thank you to Mindy for putting it on her site.


    The slides out there now and have been modified a bit from what were the original slides from last week. (Anyone downloaded the original slides?) There was originally a quote from the 19th century novel'The Yellow Wallpaper' which some advocates deemed offensive. I believe this was removed for the version up there now. UK PACE trial results were also added while they were not there before.

    At least one person also sent Gill info on OI/POTS but I guess he chose to ignore it.

    Dr. Gill needs to retire and get far far away from NIH.

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  17. Thanks so much for posting this Mindy and for being there and the excellent write-up, Charlotte!

    I found Dr. Gill's orthostatic intolerance comment very upsetting. As Dr. Peter Rowe is a friend of the family, I have alerted him to what was reported here.

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  18. Thank you Charlotte for enduring that for us.

    Thank you Mindy for telling us.

    Samuel

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  19. I can see why--I read The Yellow Wallpaper wondering the whole time if the woman depicted in it had CFS. It made it seem as if she was hysterical and it was all in her mind.

    Thanks so much, Charlotte and Mindy!

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  20. “The answer depends on the effort to find the cause.”

    How TRUE it is. We are 3 generations in to this CRUD illness. THAT speaks for itself as we have been shuffled to the bottom for years with token efforts to fund grants. Yeah....and we have one of a few advisory committees in the office of the director, HHS. Yet, recommendations from that committee have gone nowhere since 2004.

    SO what are we to do? Make lemonade?

    THANKS charlotte and Mindy and all.
    PF

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  21. Thanks guys. Disheartening about Dr. Gill, how lame. Good to hear Dr. Lo and Alter are still committed to finding the cause.

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  22. Thank you so much Charlotte, for sitting through all of that and reporting it back to us. It was invaluable!

    Thanks Mindy, for sharing it with us

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  23. Thanks to Charlotte and Mindy for relaying this information. Gill is clearly completely out of touch, he'll no doubt be gone in a year or two. It's great that Alter and Lo were there too.

    I don't find it "sad" however that "XMRV and related murine leukemia viruses (MLVs) aren’t yet accepted as human invaders or pathogens". Patients are naturally desperate for answers, but what we need more than anything is the truth, and the above hasn't been proven at all yet.

    Personally I don't think there will be 'one' cause, as Alter suggested in his final comment, but rather multiple ones as patient experience (and other studies) have shown.

    But again, I thank Charlotte for getting out there, and Mindy for relaying her report.

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  24. gill and faucci can drink a glass of my blood and that will prove once and for all if their is an infection agent involved in cfs. i was involved in the '95 hopkins study and i had syncope and b.p. drop to 80/30...i was also a patient of one of the top neurologists in the world at the jewish general hospital who is a leading neurally hypotension researcher on autonomic functions and i also had abnormal tilt table tests there as well at sacre couer hospital cariology unit in montreal...i have been tested at 3 major hospitals and dr. gill you should open your mouth only when you know what you are talking about...this just shows everyone that you and the likes of wessely are useless...i am a former world class boxer and yes there are periods in cfs when one can exercise but let me tell everyone of you that each time someone with this disease exercises they relapse backwards...i do not have to listen to your foolishness and i certainly do not need your kind to tell me how to prepare for a fight...i think i should go to one of your circus meetings and simply just knock you out...maybe a good beating is what you all need to stop the b.s. and yes children get this illness and they die from its complications...you are a disgrace to medicine...get some help...'you really need it'there is something seriously wrong with your group...dr. gill i was wondering were you ever sexually abused as a child? you are not a normal person...sincerely, aidan walsh southampton, u.k. p.s. i continue to donate blood every 2 weeks in the u.k. and i will continue to do so in protest of your b.s.

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  25. Thank you Charlotte and Mindy for this report.

    A big thanks also to Dr Alter and Dr Lo for their professionalism.

    As for Gill he is completely ignorant of the research and is a disgrace to his profession.

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  26. Did anyone get an email from the Candian ME/CFS organization?? Patients were requested not to get angry and wait on science to sort ME/CFS out. The request sounded alot like the CAA's "inside voices" campaign.

    I understand it is ineffective to devolve into chaos as a patient movement, but what the heck do established CFS organizations have against well organized political action fueled by patient frusteration and anger? Emotion can be a great driver for political change. For example, look at what anger has done to transform the approach to AIDS, the last presidential election in the U.S and the Middle East!

    I am tired of the "popcorn girl" approach to ME advocacy. I am looking to stand behind an organization that takes an active political and public educational stand to promote biomedical ME care.

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  27. Thanks for reporting on this, Mindy (and Charlotte) -- frustrating and infuriating as it was to hear.

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  28. I agree there will be multiple causes found. I think we will see endogenous retroviruses play a role like they are finding in AIDS and cancer.

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  29. Thank YOU Charlotte for sitting through this and reporting back the TRUTH! Your Lawyerly skills showed through! Thank YOU Mindy for allowing your excellent blog to play host to Charlotte's timely and accurate report! Now, Gill is a neanderthal..typical, 20 year old NIH B.S. Where is anyone who knows anything about M.E. research from the past 20 years?
    if the NIH is THIS INCOMPETENT about M.E. where is their science on Diabetes? Heart Disease? Cancer? We are talking about some 800,000 to 1,000,000 people who are very ill with M.E. and several million more who are impaired with some kind of "chronic fatigue". this is still a Multi-Billion drag on the economy of our country. who is going to pay to clothe, house, feed and medicate all these people for 30 or 40 years?
    Dr. Alter is brilliant and ethical, but VERY new to the party. It is his ethics and conscience that brings him to the table. How much longer will he stick his neck on the chopping block for us? Dr. Alter KNOWS that we are ill, and he is VERY concerned about how much damage XMRV might cause now and in the future to our blood supply. Dr. Shyh Ching Lo is ALSO a very ethical man, who studied sick gulf war vets 20 years ago, and found mycoplasmas similar to what the brilliant Professor Garth Nicolson found in both M.E. AND GWS patients. But, Dr. Lo was also NEW to the M.E. party. This entire "CFS" paradigm has been a cruel joke on some of the sickest of the sick people on this planet. May fate give true M.E. to all the naysayers for eternity!

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  30. Thank goodness and thank you for your efforts in publishing an overview. I love the inclusion of an ignorant and draconian psychology versus respectable and responsible science.
    (Never thought I'd say that about science and CFS. lol)

    I've been searching for info on this particular In-house lecture. I've seen the slides but was unable to download them without being returned to the website. I want access without the web intervention. Any help?

    Blessing and Peace.
    CFS since 1986

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  31. Doubts whether this is a real disease?
    I doubt that Dr. Fred Gill is even a true Doctor - doubting the existence of physical diseases is not what a real, qualified practitioner in this field would do.

    Such a person as this is either

    A) Batshit crazy

    B) A sociopath

    C) Ingorant.

    Or maybe there isn't any such trichotomy!

    Matt CFS/ME sufferer in UK.

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  32. Thanks for the information. I have to disagree on your comments about Mayo Clinic. My daughter was told she was crazy by local doctors and then referred to Mayo clinc where she was originally diagnosed with Post viral fatigue in 6th grade. She was able to continue in competative figure skating but by 9th grade she was a mess. We returned to Mayo where she was diagnosed with postural orthostatic tachycardia syndrome. After a couple of years trying different medications and keeping up an exercise regime that she has built up to 30 minutes to encourage her muscles to push blood she has done very well. Despite missing an average of 50 days of school for 6 years she graduated from high school. Most of the days she missed were due to the challenges of getting a teenager to understand what POTS was and the real need to manage it. She attended college locally last fall and was very successful with 9 credits. She has gone away to school for her second semester experiencing dorm life and taking 11 credits. Her success is due to Dr. Philip Fischer at Mayo clinic who worked to get her a right combination of medicines to manage her POTS and encouraging an amount of exercise that worked for her. Her success is also due to her ownership of her condition and the responsibility to manage it. She has a regimented schedule that had her in bed by 9pm every evening and has extended that with later morning classes so she can still get 12 hours of sleep. Of course she also manages a social life and if she takes the chance to short herself on sleep she works in some power naps. She knows her life is different and envies the typical college student but she knows she is not them and she is different. She also knows if she sticks with her plan it will work and she will graduate from college. It may take longer and have its ups and downs but nothing is going to stop her. Without the encouragement of her Dr. and nurse at Msyo to stick with it and telling her life was possible she would not have come this far. So dis Mayo as you like but I cannot. The "comment as" line does apparently allow me to just put my name but you can find me at nellmcphillips@hotmail.com if anyone would like to discuss our experiences.

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  33. There's something really fishy about Dr Gill.
    His views are simply ludefisk!

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  34. Thank you Charlotte for your report and thank you Mindy for posting. Gill's performance was atrocious. Fauci must have been pleased. The truth will come out and we will see the day that the Gill's, Fauci's and White's of the world eat their words.

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  35. O.k. So the debate about advocacy continues. Cort weighs in chastising critics of Nancy Klimas and the good doc at WPI. I am left asking myself why there is so much hub-a-loo about criticizing established physicians, researchers, and advocacy groups? Are they above reproach?

    I am struck by the debate over negative evaluations of advocacy groups in particular. In my view it is responsible to assess groups who speak for patients and operate on their donations. Advocacy groups are directly accountable to their donors and should address patient concerns directly with round table meetings. Perhaps criticism should be seen as a sign that an organizations consider restructuring to address shifting patient priories, rather than a personal affront.

    I understand non-profit organizations are charitable businesses who are accountable to their client base. As for independent physicians and scientists, I will question what you do and hope you will engage in dialouge with patients like ME when we do not agree.

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  36. The willful ignorance of people like Dr. Gill continues to astound me.

    "What about the many studies that revealed serious physiological abnormalities in --"

    "La la la la la I CAN'T HEAR YOU!!!"

    Thanks, both of you, for reporting this.

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  37. charlotte, you are great. thank you!!! -- rivka

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  38. These "Demystifying Medicine" courses offer credits and are said to be for educational purposes.

    "Primarily directed toward Ph.D. students, fellows, and staff, it is also of interest to medical students and clinicians. The course is designed to help bridge the gap between advances in biology and their application to major human diseases. Each session includes clinical and basic science components which are presented by NIH staff and outside invitees."

    I think this one fails miserably on several counts. It might as well be teaching astronomy students that the earth is flat for the relevance presented by Gill. This kind of nonsense should not be "taught" to anyone.

    You may contact Win Arias at ariasi@mail.nih.gov
    if you want to share your opinion on this "course".

    Thank you Charlotte for attending and thank you Mindy, as always, on top of things.

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  39. Charlotte von SalisFebruary 28, 2011 at 2:13 AM

    Oerganix, that's exactly why I showed up at the course. I wanted the future researchers and clinicians in the audience to get some truthful education. If the video isn't edited too much, those that watch the archived version will recognize what's really "wrong" with us.

    The Q & A sessions were frustratingly short. I got in what I could. Alter vaguely alluded to the NIH State of the Knowledge workshop to be held in April; I added all the details. The audience was quite interested.

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  40. "Gill gave kudos to the just-released PACE study. "For those of us who've been preaching this [graded exercise therapy],” he said, “it's nice to show this study.""

    That statement is going to come back and bite him on the butt, given how poorly the PACE trial actually performed. Spin only works so far and for so long. Even the PACE authors had to concede the results only supported a secondary role for their precious therapies, and certainly provided no comfort for the underlying causal model they use. Some people, including 'world leading experts', just can't see what is right in front of them, and don't want to.

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  41. Thank you Charlotte for attending and for your excellent reporting, and to Mindy for publishing. I really really hope Alter and Lo stay involved, and the likes of Gill are booted out of our disease. Either way, it is good to be informed of what is going on at NIH. Thanks again. -verveine

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  42. Thanks, Charlotte. I wonder why more people aren't talking about Stanford's new CHRONIC FATIGUE INITIATIVE. Their new website is inspiring.

    http://chronicfatigue.stanford.edu/

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