Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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John Herd: "Looking Back and Ahead'

Discussion in 'Action Alerts and Advocacy' started by Cort, Aug 19, 2009.

  1. Cort

    Cort Phoenix Rising Founder

    John Herd has published a very interesting piece on the past and future of ME/CFS advocacy. I don't agree with all of it but I agree with much of it. I think it is a more thoughtful piece - light-years away from Hilary Johnson's blog - and is definitely worth reading - altho there are parts I vigorously disagree with.

  2. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA

    What do you agree with and disagree with?

  3. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    John's previous essay

    This is the essay John wrote before the one above.

    The Politics of ME/CFS Advocacy and Dialog Rhetoric

    John Herd

    Across the Internet there is no shortage of dialogs pertaining to ME/CFS advocacy issues. Everyone partaking has their viewpoints, usually presented as mix of factual information and interpretational opinion.

    Journalistically one would wish for a clear separation between factual reporting and interpretational opinion, but that is often not the case. Some writers are better [more careful] at preserving that separation than others. And many selectively use singular facts, sometimes incomplete, taken out of context or even distorted to support their opinions.

    To add to inaccuracies, often stand alone matters may appear very different from what they actually represent, either when taken out of context from the historic chain of events that lead up to them, and/or without additional information that the public may not be privy to.

    Much of the dialogs we see taking place about ME/CFS advocacy matters falls prey to many if not all these pitfalls. It illuminates the importance of having a preserved object history.

    Lacking an objective knowledgeable historic perspective, the less informed can not accurately judge many current events or the multitude of opinions being thrown at them.

    There lies the responsibility of [responsible] advocates, to be very well informed about the breadth of facts, to interpret events based upon that knowledge, and objectively share their insights with others.

    Such advocates are a rarity in the expanse of people talking about ME/CFS matters online. There certainly are some out there, but their voices often get lost in the drown of others speaking about issues.

    There are no required credentials for someone to proclaim them self an advocate or activist. On the Internet anyone can be or appear to be whatever they wish to be. Some of those doing so fall significantly short of presenting the kind of journalistic accuracy, reliability or integrity we would wish for.

    There are other people out there who do not don the cloak of advocate or activist who are very well informed and do share very objective sound interpretation of events.

    But how are the less informed supposed to judge the plethora of viewpoints out there and those who are conveying their viewpoints? There is no easy answer.

    It all comes down to being your own advocate, learning all you can, learning not to necessarily take things at face value but rather reading between the lines, and in time all the rhetoric will begin to be seen as just that.
  4. Cort

    Cort Phoenix Rising Founder

    Looking Back - At the CFIDs Association

    thanks for posting that last post. So far as I'm concerned it's basically the pot calling the kettle black. Here's my response to John's post (recently posted on my blog 'bringing the heat')

    John Herd’s recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts we’ve seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the post’s tone was mild the post itself too often lapsed into a kind of seamy and mostly baseless conjecture we see too often.

    Essentially the post asserted many of the CFID’s Association’s activities over the past few years derived not from an intention to benefit the patient community but were simply callow money grabs. It’s an idea that’s been passed around again and again in discussion groups.

    This is what it said

    This kind of discourse which consists of ugly intentions for just about any activity is not uncommon. In this kind of conversation no good deed goes unpunished; a national media campaign is cast in the light of a money grab to support a failing organization; an investigation into the CDC’s lagging productivity is done out of pique or is another type of money grab. Acting to wrestle resources out of a government agency becomes ‘enabling’ it. A recovery story is nothing more than a scam.

    This post did not suggest all these but let’s take a look at what it did suggest. Was the CFID’s Association ability to compel the CDC to mount a Provider Education Program nothing more than a money grab? Or was it an honest attempt to get more recognition for this disease? A little digging suggests that the argument is based on misperceptions.

    Misperception #1:
    The CFID’s Association of America Relies on its Membership To Pay Its Bills - The CFID’s Association gets money for its day to day operations from members who provide monthly contributions and from its major donors not from its membership dues. The thirty-five dollar membership essentially pays for the publication of four issues of the Chronicle every year. The 2007 Annual Report (the last available on the website) indicated that the membership dues provide 10% of the organizations operating budget. Donations, on the other, hand make up about 90% of its budget. This is nothing new; every year the CFIDS Association goes on a separate funding drive to pay for its daily operations.

    The history of the organization suggests that it’s been doing fine financially. About the same time this it was purportedly about to tank financially it took on a major new and risky effort. First it hit up its donors for a Million Dollar Research Initiative. At the end of that campaign it hit them up again for it’s operating funds. Because it did the Research Initiative first it ran the risk of the well running dry when it launched its operating campaign. These are not the actions an organization that was on the ropes financially - as John suggested - would take.

    Misperception #2 - the CAA Could Have Taken on the CDC At Any Time But Chose Not: The CDC’s issues of fiscal mismanagement have not been ongoing. Prior to the period in question the CDC’s CFS research program, in fact, was on fiscal oversight. It was only after the oversight lapsed that the productivity of the program slowed and money started getting flushed down the toilet; i.e. the CFID’s Association was not reporting on the CDC’s fiscal issues not because it was enabling the CDC but because its fiscal problems had not occurred. The program was put on fiscal oversight to ensure that those kind of fiscal issues did not occur.

    Misperception #3:
    The CFID’s Association of America Had Nothing to Lose and Everything to Gain by Attacking the CDC- The CAA ran two risks when it attacked the fiscal mismanagement in the CDC’s CFS research program; direct financial losses and, if John’s Herd’s thesis is correct, the threat of legal action.

    The possibility of ‘retribution’ from the CDC was brought up by the CFSAC panel. Kim McCleary declined to comment on that and I couldn’t figure out what that meant. I suspected it was just talk.

    But at the Reno Conference I found out that the CFID’s Association of America is still receiving payment for the services it provided for the CDC. If my understanding is correct the CAA provides the services (i.e. foots the bill) and then bills the CDC for them. (This is apparently why so much funding is classified as ‘restricted’ in their annual reports). This meant the CDC’s the ability to hold up or withhold funding from the CAA could potentially cause it a great deal of trouble and that’s apparently exactly what’s happened.

    Once the CAA started their investigation the CDC apparently began to engage in an ugly pattern of petty requests, late payments and astonishingly snide (and amateurish) comments from CDC personnel. The fact that this happened in the midst of the worst economic downturn since the Great Depression of course, only exacerbated matters for the organization.

    A ’smarter’ organization would have waited until it had received all its payments from the CDC to take it on in the public arena. The CFID’s Association, however, had a objective that would not wait. With the CDC’s CFS research team undergoing it’s 10 year evaluation the CAA faced a once in a decade opportunity to institute major changes in a program they felt was failing badly and they took it despite the knowledge that doing so could expose them to ‘retribution’.

    Misperception #4: The CFIDS Association of America Is Engaging in Some Sort of Fraudulent Activity: The idea that the CFIDS Association is paying for its operations by siphoning money out of the funds for the Media and Provider Campaigns does not hold water. For one it proposes that the CAA is engaging in fraudulent activities for which it could be held legally responsible. It would be a strange thing, if that was true, for the CAA to give the CDC an excuse to dig deeper into its own records and possibly engage in legal action against it. In a sense the CFIDS Association’s rigorous attack on the CDC provides all the evidence one needs to conclude that it was not using CDC funds to run its day to day operations as John infers.

    What is the most logical conclusion to the CAA’s activities with the CDC? It’s the simplest one.

    One: that the CAA spied an opportunity to get the CDC to pay for a nationwide media campaign on the behalf of ME/CFS patients and it acted on it.
    Two: that when the productivity of the CDC’s program declined and evidence of fiscal mismanagement occurred the CFID’s Association of America acted appropriately and brought it to our attention.

    Misperception #5- The CAA’s Research direction is unclear. The post also suggested that we don’t which way the CAA is going to go with its research (presumably behavioral or physiological)

    The question amongst ME/CFS doctors and patients alike is what are the CAA’s actual views about the illness, possible etiology and what direction will they attempt to take research in with their funding. That we will have to wait and see.

    Perhaps if John would took a look at their past and present research projects he’d have a better idea of what the CAA thinks causes this disease. The CAA is funding studies
    • that will elucidate the gastrointestinal ‘microbiome’ in ME/CFS patients; this should enable them to help determine if Dr. De Meirleir’s assertions are correct
    • that are identifying high rates of lactate in the brains of ME/CFS patients suggesting mitochondrial problems are present
    • that are uncovering abberrant receptors that maybe informing patients brains that extensive muscle damage is present (when its not) triggering fatigue and other signals in the brain
    • determining whether endogenous retroviruses are active in this disease
    • why so many patients have trouble standing (postural tachycardia syndrome)
    • The CAA recently funded the Pacific Fatigue Lab’s work which indicates that many people with this disorder have a fundamental metabolic problem that keeps them from exercising.

    A Central Question?
    - John is also concerned about what the CFIDS Association believes causes this disease is. Without directly saying so he’s clearly implying the CFIDS Association of America may believe there is a behavioral etiology to this disease. Why does he believe this? Neither their research projects nor their publications nor their public statements suggest they do. The leader of the CAA, Kim McCleary recently publicly stated that CBT is not a viable research pathway and the CDC to task for including it in their future studies. (Kim McCleary, is also married to a man whose mother has been one of our fiercest advocates. This woman stood up at the CDC review session and lambasted the CDC for their horribly ineffective approach to this disease.)

    There are things you can take the CAA to task for; not being confrontational enough, for not engaging patients enough, perhaps for not employing the best strategies. These are the things we should be discussing. The CAA has a responsibility to conduct itself in the professional and effective manner but as John noted in a recent post patients also have a responsibility to be informed about the issues they are speaking and to speak in a constructive manner.

    If both sides hold up their end of the bargain our possibilities of making a difference in this disease are enhanced greatly. If they don’t and one side surely didn’t in this case then it’ll be more of the same; tepid activity, poor patient support, federal bureaucrats in control of our agenda, and more years of stagnation. Let’s have a real discussion: a discussion of how we can come together to effect change.
  5. Warbler512


    There's a lot to agree with... both Hillary's letter and Mr. Herd's, namely that the CFS/ME community is losing ground while a sense of history and mission is perhaps getting lost. And I'm glad Hillary hasn't retired, because a German shepherd is sometimes what's needed to help wake up the sheep.

    But some air of diplomacy is preferable even when great change is needed, and Mr. Herd is right: without knowing all the details of the inner workings - and few patients ever will - it's too easy to start carving up eachother like turkeys. It's hard to be like MLK in this situation, but calling anyone Nazis (though I don't find the analogy totally wrong with respect to some interests) is basically going Malcolm-X. It does tick me off seeing some of our medical advocates appear to kiss up. The reality for them and us, though, is no bucks, no Buck Rogers. We could take almost the entire CFSAC to the mast for having their stamp on the CDC's so-called physician training. Watching the last meeting, though, it's obvious Drs. Jason and Oleske aren't happy dancing on strings, which they're doing for us. And whomever would care to replace Ms. McCleary would have to deal with the Feds somehow. The only way to circumvent them is to go out of the country, and while I applaud that other U.S. advocacy group for doing so with their studies, I'm not certain it's going to provide the entire answer. I'm damn glad WPI exists.

    I realize Cort has met Ms. McCleary; most of us never will. It's hard to argue, though, that the contract with CDC was inherently risky, and the rewards have been less than we should expect. A travelling photo-show? We hardly "look" sick! Radio ads? I finally heard my first one; most people aren't up at that hour. These were well meant, but they were minor in the big scheme. Telling the public CFS is "real" has had little impact where it counts, especially with the CDC turning right back around and pursuing this psychosomatic stuff. I think CAA's making some good moves to get back on track. Time will tell whether reinvention will work, and it may depend on what hat Dr. Vernon decides to wear, as she's alleged to have helped write/rewrite or expound our current "definition."

    - Chris
  6. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA

    I think you'll find that many online people with long experience in advocacy are going to stop trying to engage with you after your last two blogs and move on to doing other things that they think may prove beneficial. I am. Endless online debates/arguments become tedious and distracting when they don't seem to be getting anywhere. There are too many bad things happening in the world of CFS to waste significant time and effort.
    I suggest going through this long thread and considering your attitudes about the CDC two years ago, then considering all the comments about the CDC more recently including John's testimony below.

    CDC Strategic Research Plan for their CFS program: testimony from John Herd this year

    Over the past two decades I have been involved in CFS advocacy. It had been my hope that all CFS stake holders could be encouraged to cooperatively work together, thereby accelerating advancement in the understanding of the illness.

    Towards that goal I have sat on several Department of Health and Human Services (DHHS) committees, worked with many patient organizations, participated in related conferences, and worked extensively behind the scene.

    Observing the process of medical investigation was not new to me when I became involved with CFS advocacy; I came from a career of working with medical researchers and educators.

    For the past 20 years I have observed that the CDC's CFS program has not sincerely worked at investigating the broad range of multi-system pathologic dysfunctions involved in the illness, nor microbes and pathogens that may be potentially involved in CFS.

    Since the CDC's first involvement with CFS the agency has allowed internal agendas and opinions drive their investigations rather than allowing objective science to drive the research. This is a corruption of the scientific process.

    All too often we have seen narrowly focused and poorly designed CDC investigations conducted in such a fashion that they would assure that outcomes matched the opinions of the CDC's chief investigator.

    Repeatedly the CDC's CFS department has ignored the majority of the world's independent CFS investigators and their research findings. Instead the CDC's CFS department has surrounded itself with a small group of like minded narrowly focused investigators, then claiming it to be "an international panel of CFS research experts."

    In their committees that have shaped their research diagnostic criteria, they have formed their own narrow criteria proposals while ignoring input that conflicts with the CDC's opinions about the illness. The CDC's CFS department has then deceptively claimed their diagnostic criteria proposals to be the product of "international consensus." It is easy to reach consensus amongst like minded people. It is akin to playing poker with marked cards.

    Now the CDC's CFS department has created what it calls their "Empirical case definition" of the illness when in fact it is far from empirical. For their observations are only focused upon a narrow portion of symptomatology that may be present in a narrow subgroup of patients they define as having CFS. It is not just independent investigators that find significant flaws and shortcomings in the CDC's work. When looking at the symptomatology of patients in the CDC's studies, the vast majority of patients afflicted with CFS make comments like, "those patients don't have the same illness I have," or "I couldn't function on the level of those patients." And now the CDC is redefining CFS to be a stress disorder, again ignoring the bulk of the objective physiologic symptomatology of the illness and the majority of independent CFS investigators. The corruption of science goes on.

    Most of the important advancements in CFS research have come not from investigators who have received help and/or funding from DHHS, but rather from investigators who have conducted their work despite the biased actions and inactions of DHHS in regard to CFS.

    Most medical investigators are not apt to be entirely candid about the views of DHHS activities pertaining to CFS. They rely on research funding and are hesitant to bite the hand that feeds them, or may feed them down the road. The CDC's "Chronic Fatigue Research Program External Peer Review" was not a sincere external peer review unless "peer' means like minded or unlikely to be candid. Only a few doctors even took part.

    If the CDC wishes to conduct an honesty objective and forward thinking review of its CFS program it would request the input of a broader range of CFS investigators from around the world that represent the many fields of investigation that are needed. Without that the process is little more than a white wash, a token public relations gesture to look good.

    There is no point in developing a long term strategic plan if true experts' opinions and recommendations are not honestly taken into account. We need a plan the will be in the spirit of the founding principles of the CDC, to truly attempt to investigate and gain understanding of illnesses, to develop treatments for those illnesses and to keep the public informed about true empirical information; in essence to protect the public. The CDC's CFS department has not and is not doing that. If anything they have inflicted more harm upon the CFS patient sector with their actions and lack there of.

    Until an honest sincere review and reevaluation of the CDC's CFS department is conducted, and new investigators are brought in who will conduct the kinds of scientific inquiry need, most stakeholders will not support continuation of the CDC's CFS department as it has been functioning. If the CDC is unwilling to bring this about then it is time for Congress to conduct its own investigation into the CDC's response to the illness.

  7. Cort

    Cort Phoenix Rising Founder

    What does this have to do with my post on John Herd? Can you respond to any of my points there? Point out which of my perceptions are incorrect? Or is it the fact that this paper deals with one written by John Herd?

    My position is that when the CDC does good work they should be applauded and when they don't do good work they should be criticized. When Suzanne Vernon was running the lab after 2000 the CDC, despite everyone's desire to paint that organization with one brush, was doing good work. I challenge you to go back and demonstrate that they weren't. I'm not saying that everything they were doing was great and the Empirical Definition was clearly a mistake but they are also engaging in very open ended research; that is they were doing large very innovative gene expression projects in which any number of 'solutions' could've popped out.

    My impression of most 'long-time' advocates unfortunately is that they do not follow or read the research; they simply the overlay their long-held opinions on whatever is happening. There is a filter through which they view things; if the CDC is studying the stress response system they interpret this as psychological. Never mind that the 'stress response' research has largely had consistent results. Never mind that the stress response system regulates the immune system potentially opening it up for pathogen invasion. Never mind! These advocates heard the word 'stress' and that was the end of the discussion for them.

    Of course some people will interpret this as saying I like the CDC or I am soft on the CDC. Instead I believe I am producing a balanced picture of a complicated situation. Now it may very well be that the CDC with Bill Reeves as the sole major figure has decided that psychological or mind-body approaches are the only way to deal with this disease. Evidence certainly points in that direction. But that was not their thrust when Suzanne Vernon was heading their lab. I encourage you to take a look at the literature and see if that's true.

    Here's their studies on pathophysiology going back a few years. Please take a look at them and tell me what your problem is with that. I have problems with some of it but I probably don't have your problems or John herd's problems.

    • Impaired Immune Function in Gulf War Illness. BMC Medical Genomics. 2:12, 2009. doi 10.1186/1755-8794-2-12.
    • Interferon-alpha Effects on Diurnal Hypothalamic-pituitary-adrenal Axis Activity: Relationship with Proinflammatory Cytokines and Behavior. Molecular Psychiatry. 23:327-337, 2009 doi:10.1038/mp.2008.58.
    • Activation of CNS inflammatory pathways by interferon-alpha: relationship to monoamines and depression. Biological Psychiatry. doi:10.1016/j.biopsych.2008.08.010.
    • Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome. Molecular Medicine. 15:34-42, 2008. doi:10.2119/molmed.2008.00098.
    • A Bayesian approach to gene-gene and gene-environment interactions in chronic fatigue syndrome. Pharmacogenomics 2009; 10:35-42.
    • Association of peripheral inflammatory markers with chronic fatigue in a population-based sample. Brain Behavior and Immunity DOI: 10.1016/j.bbi.2008.11.005
    • The chronic fatigue syndrome: A comparative pathway analysis. Journal of Computational Biology 2007; 14:961-972 doi:10.1089/cmb.2007.0041.
    • Evidence of inflammatory immune signaling in chronic fatigue syndrome: A pilot study of gene expression in peripheral blood. Behavioral and Brain Functions 2008;4:44 doi:10.1186/1744-9081-4-44.
    • Neuroendocrine and immune network re-modeling in chronic fatigue syndrome: An exploratory analysis. Genomics 2008 doi:10.1016/j.ygeno.2008.08.008
    • Genetic evaluation of the serotonergic system in chronic fatigue syndrome. Psychoneuroendocrinology 33:188-197, 2008 doi:10.1016/j.psyneuen.2007.11.001
    • Polymorphisms in Toll-like receptors-2 and -4 are not associated with disease manifestations in acute Q fever. Genes and Immunity 13 September 2007; doi:10.1038/sj.gene.6364428
    • Inclusion of the glucocorticoid receptor in a hypothalamic pituitary adrenal axis model reveals bistability. Theoretical Biology and Medical Modeling 2007;4:8.
    • Post-infective fatigue syndrome is not associated with altered cytokine production. Clinical Infectious Diseases 2007, 45:732-735.
    • Gene expression correlates of postinfective fatigue syndrome after infectious mononucleosis. Journal of Infectious Diseases 2007;196:56-66.
    • What causes prolonged fatigue after infectious mononucleosis-and does it tell us anything about chronic fatigue syndrome? Journal of Infectious Diseases 2007;196:4-5.
    • Preliminary evidence of mitochondrial dysfunction associated with post-infective fatigue after acute infection with Epstein Barr Virus. BMC Infectious Diseases 2006;6:15.
    • Glucocorticoid receptor polymorphisms and haplotypes associated with chronic fatigue syndrome. Genes, Brain and Behavior 2006; doi:10.1111/j.1601-183X.2006.00244.x
    • Correlation of psycho-neuroendocrine-immune (PNI) gene expression with symptoms of acute infectious mononucleosis. Brain Research 2005; doi:10.1016/j.brainres.2005.11.013

    Again I am not saying that the CDC should be lauded for everything they do. But they should not be more or less blindly attacked either.
  8. Cort

    Cort Phoenix Rising Founder

    inI just looked over my points regarding John Herd's piece. I think it's very clear that John Herd did them a huge injustice! And that he spun out his tale without checking out the facts - which is obviously not good. Those were an ugly things to say and worse they were in inaccurate thing.

    When I said it was the pot calling the kettle black I was referring to this sentence
    I don't think John was informed your objective in several sections of his his latest post Here are my points.

    • Membership dues do not drive that organizations funding. The CAA's contributions - which pay for the organization's funding - on the other hand have remained solid.
    • The CAA did not have reason to hammer the CDC on fiscal matters because their fiscal matters were being carefully watched.
    • The CAA had a lot to lose by attacking the CAA; first of all if John's assertion is correct they were committing some sort of fraud which the CDC, having been pricked by the CAA, would probably be very happy to uncover. Two - the CDC'c method of payment made it easy for them to hammer the CFIDS Association fiscally which is apparently just what they did.

    Then there's the fact that he questioned the direction of the research program! All all you have to do is look at their research to determine what direction the research program is taking! He apparently didn't even take the time to do that. Here they are again:

    • elucidate the gastrointestinal ‘microbiome’ in ME/CFS patients; this should enable them to help determine if Dr. De Meirleir’s assertions are correct
    • that are identifying high rates of lactate in the brains of ME/CFS patients suggesting mitochondrial problems are present
      that are uncovering abberrant receptors that maybe informing patients brains that extensive muscle damage is present (when its not) triggering fatigue and other signals in the brain
    • determining whether endogenous retroviruses are active in this disease
      why so many patients have trouble standing (postural tachycardia syndrome)
    • The CAA recently funded the Pacific Fatigue Lab’s work which indicates that many people with this disorder have a fundamental metabolic problem that keeps them from exercising.

    My question is why that doesn't make any difference? Why in the interest of fairness would you let something like that just slide by? Your response is basically to say I'm not to listen to that! I'll just stop reading your blogs on these subjects. I think you should continue reading them! Based on this exchange I think you should read them more than ever. :)
  9. BEG

    BEG Senior Member

    Southeast US
    I am a long-term fan of your articles and contributor to your website. I enjoy the writings of John Herd, too. From both of you, I come away emotionally enriched, factually informed about CFS, and enlightened by your varying opinions. But it takes both of you to bring all that to the table. A show of mutual respect and kindness between you would make this reader (and Roy, too) feel a lot more comfortable. B.E.Girl
  10. Cort

    Cort Phoenix Rising Founder

    I admit I really did see red over that paper. I've heard those ideas again and again and honestly, they really get to me.

    John and I have our flareups -virtually always over the CAA actually - but I think we're good. Right after that I posted his fascinating story on the internet. John has a great touch with his writing and is a real asset to the community. I think we're in agreement on the vast majority of matters. We did communicate via e-mail after that post.

    Thanks for your comments!

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