You may remember This Week in Virology (TWiV) from their XMRV coverage several years ago. I’ve remained an avid listener of the show, simply because it is such a great ongoing conversation about science. And TWiV has continued its coverage of ME/CFS, most recently in discussing Dr. Ian Lipkin’s latest paper and the IOM report.
I was fortunate enough to meet the show’s host, Dr. Vincent Racaniello, in 2011, and have corresponded with him since. So after TWiV discussed Lipkin’s paper, I wrote in, and then they read and discussed my letter. For ease of listening and sharing, I’m gathering the whole sequence here. UPDATED March 30, 2015 with transcript and follow up letter.
TWiV Episode 329: discussion of the Lipkin paper and the IOM report occurs at approximately between 11:15 and 25:10 in the episode.
I wrote the following lengthy email to the show afterwards:
Dear Vincent and friends,
I’m sure you have received other emails regarding your discussion on Episode 329 about ME/CFS and Dr. Lipkin’s latest paper, but as a long time fan of the show who has lived with ME/CFS for more than twenty years, I could not resist chiming in with my two cents.
Dickson commented that patients with CFS are self-diagnosed, going to doctors who are prone to believing their symptoms. For the vast majority of patients, this is not true. The IOM report said that 800,000 to 2.5 million Americans may have this disease, but that 80-90% of them are undiagnosed. I have never met an ME/CFS patient who easily found doctors to believe them. Every single one of us has been dismissed or even ridiculed by one or more doctors. We’ve been told that we are lazy malingerers, that we have psychological problems, or that we just need to reduce stress. It is simply not the case that people “feel lousy,” as Dickson put it, go to the doctor, and come home with the CFS label.
As Alan noted, there is no doubt that the controversy over case definition has hindered progress in this field. Dickson was right to ask how many diseases are really included in an ME/CFS population, and he pointed out that absent an objective test, conclusions are preliminary. The IOM made recommendations to address that. First, the SEID criteria are no longer a diagnosis of exclusion. If a patient fits the criteria, then he or she should be diagnosed with the disease. The onus is put on physicians to make differential diagnoses, and physician education will be of critical importance if these recommendations are to succeed. Second, the IOM explicitly stated that their recommendations were based on current evidence and should be revisited in no more than five years. They anticipated that new evidence, such as Dr. Lipkin’s paper or the studies demonstrating brain inflammation, would change our understanding of the disease’s pathogenesis and perhaps validate biomarkers for diagnosis.
The Lancet editorial stated that the IOM was heavily and negatively lobbied for undertaking this study, but failed to acknowledge that there were legitimate scientific and political reasons for this opposition. First, at the time this study commenced, the IOM had never produced a disease case definition. There was no guarantee how many ME/CFS experts would be appointed to the panel, and the community feared this “definition by committee” would be created by people who knew nothing about the disease. Second, the ME/CFS field has upwards of twenty proposed definitions, so spending one million dollars to create the twenty-first seemed like a questionable strategy. Third, given the IOM’s prestige, we knew that we would likely be stuck with the results for a long time, and if the case definition was flawed then this would have long-term negative consequences. Fourth, the Department of Health and Human Services pursued this IOM study in secret. No ME/CFS experts were consulted about it, and the Department’s own CFS Advisory Committee was not informed of the plan. ME/CFS advocates discovered the contract by accident, and HHS completed the deal over the vociferous objections of advocates and researchers alike.
All that being said, it is not true that the entire ME/CFS community continued to negatively lobby the IOM after the study began. Certainly, some advocates did so and have continued to object (and not without reason). But many advocates, myself included, gave presentations to the IOM panel and provided written input. In fact, the public access file for the study, which contains all of the written materials submitted to the panel, totals over 5,500 pages. In my opinion, there is ample evidence that the panel listened to this public input.
The Lancet editorial also mentioned the PACE trial and the Cochrane review on exercise therapy. This brings me back to Dickson’s question about how many diseases are lumped together in the CFS category. Depending on the case definition being used, it could be more than one. The Oxford CFS definition, in particular, is overly broad, as it requires only six months of subjective fatigue. A patient population defined by only that subjective symptom is larger and less precise than a more narrow definition like the IOM SEID or the Canadian Consensus Criteria. In fact, a recent report from an NIH panel and a systematic evidence review by the Agency for Healthcare Research and Quality both recommend that the Oxford definition be retired because results from studies of this broad group cannot be accurately applied to the more specific ME/CFS group. This is important, because most of the studies in the Cochrane review on exercise in CFS were Oxford studies. The PACE trial also used the Oxford definition to enroll subjects. In fact, most of the studies purported to show that exercise is beneficial for patients with CFS have used the Oxford definition. In contrast, there is a growing body of work, such as this paper by Keller et al, showing that ME/CFS patients (defined more narrowly than Oxford) have measurable abnormal responses to exertion. The case definitions are not interchangeable, and research results should not be extrapolated from one group to the other.
Patients with ME/CFS do not just “feel lousy.” This is a serious disease with serious consequences. I have been housebound, and sometimes bedbound, for more than twenty years. The most severely ill patients suffer from numerous neurological symptoms, including ataxia and allodynia. This disease costs our economy billions every year in lost productivity, and yet NIH spends only $5 million a year on research. Even Dr. Lipkin has stated publicly that his grant application was denied after a reviewer claimed biomedical research was unnecessary because ME/CFS is a psychological disorder. The IOM report is an exceptionally well-referenced document, and states unequivocally that this is not a psychological disorder. It is my fervent hope that we can leave that controversy behind, and move forward with rigorous, well-funded research into carefully characterized patients. This is the only way we will find treatments and get our lives back.
Thank you for continuing the conversation about this disease. Vincent, I also send you best wishes for your son’s recovery.
Cheers,
Jennie
On TWiV Episode 330, Dr. Dickson Despommier read my email and it was discussed at some length by the group. The discussion runs from 12:57 to 29:10, and the wonderful Russell Fleming has kindly provided me with a transcript of the discussion. As you can see, a few additional questions were raised, so I sent this follow-up email to TWiV:
Vincent,
Don’t feel obligated to read this email on air because I’m not trying to monopolize discussion, but I want to answer a couple questions raised during the Episode 330 discussion of my letter re: ME/CFS.
Rich asked if I had a role in a CFS organization. When Vincent and I met, I was finishing my term as a member of the Board of Directors of the CFIDS Association (now called the Solve ME/CFS Initiative). Since the end of my term in 2011, I have not had a role in that or any other ME/CFS organization. Instead, I’ve focused my efforts on my blog, Occupy CFS, and on individual advocacy efforts.
Alan commented that giving more money to ME/CFS research means taking money away from another disease. It’s not that straightforward. I have documented that in FY2014, 62% of disease categories listed by NIH received an INCREASE in funding over FY2013. ME/CFS was one of only 17 disease categories out of 244 that received funding essentially flat with 2013. The remaining 31% of categories saw funding decrease. HHS employees frequently tell us there is no money, but that can’t be true if the majority of disease categories are seeing an increase in their funding. Since Alan mentioned HIV/AIDS, I checked their funding and found that HIV/AIDS research increased by $80 million from 2013 to 2014, and is projected to receive a $22 million increase in 2015. Couldn’t NIH reduce that to an increase of $15 million, and spend the other $7 million on ME/CFS? Both categories still go up, and ME/CFS’s budget would more than double. Obviously, there is money – it’s just not coming ME/CFS’s way.
There are several other things that could be done to increase ME/CFS research funding at NIH. ME/CFS does not have an Institute home. Instead, research is coordinated – with no budget and no dedicated program officer – through the Office of Research on Women’s Health. Setting aside the fact that men get ME/CFS too, this arrangement essentially means that ME/CFS research has to shake a tin can and try to get an Institute’s attention and interest. Moving the portfolio to one of the Institutes might help this situation. Second, NIH could issue an RFA with set aside funds for research into a high priority area such as large-scale validation of biomarkers, rigorous prevalence and epidemiology studies (to get at the “true case” question), and/or large -omics studies. NIH last issued an RFA for this disease in 2006, but has refused every subsequent recommendation and request to repeat the process.
Kathy asked how many non-ME/CFS experts served on the IOM panel. While the community feared there would be few or no experts, in the end the IOM appointed 8 members who had clinical, research, or personal experience with ME/CFS and 7 members who had none. The vast majority of the report’s peer reviewers had ME/CFS experience, as did every guest invited to present to the IOM panel at its public meetings. There were a diversity of views represented among those groups, but that is as it should be.
Alan rightly questioned my statement that HHS pursued this study in secret. I have accumulated documentation through personal communications with HHS employees and members of the CFS Advisory Committee, and through FOIA requests. HHS began working on the contract in early 2013, and employees were explicitly instructed not to share any information with the Advisory Committee or the public. HHS did publish notice of its intent to sole source the contract on a federal contract site on August 27, 2013, but made no announcement and never published the information in the Federal Register. Advocates discovered the posting and began an opposition effort, and the sole source contract was cancelled on September 4, 2013. No additional details were made public, despite repeated requests to HHS, until the September 23rd announcement of the contract signing as a Task Order under NIH’s standing contract with the National Academy, thus avoiding the requirement to give public notice of the specifics in advance. I made an attempt at summarizing the timeline, and why this approach was so disastrous for the HHS-community relationship, in this post just after the contract was signed.
On a more personal level, the most telling part of your discussion was Vincent’s statement that he was advised to avoid the CFS label for his son because then no doctor would do anything to help him. This happened to me. One infectious disease expert I consulted early in my illness said, “You have CFS but there’s nothing we can do for you. We can arrange for counseling to help you live with it. Maybe you’ll get better in five years.” In fact, there are things patients can do to help alleviate or cope with symptoms, but there is no systematic way to access those treatments, and almost no ME/CFS specialists to consult. The conservative estimate is 800,000 people have ME/CFS (using the 1994 Fukuda case definition), and 80% have not been diagnosed. That means 640,000 have absolutely no help and nowhere to go because they don’t even know what they have. The other 160,000 who do have the label may have to wait months or years to access a specialist, or they give up and turn to alternative medicine, or their non-specialist doctors prescribe unproven therapies like antidepressants and exercise which could be dangerous to them. We cannot allow this to continue.
My thanks to all of you for covering this issue. Public dialogue like yours can only help.
Cheers,
Jennie
UPDATED April 5, 2015: My second email was read and discussed on Episode 331, along with emails from Steve, Claudia Goodell, and Mary Schweitzer.
My sincere thanks to Dr. Vincent Racaniello and the TWiV hosts for continuing the conversation about ME/CFS. They do great work. Listen to the podcast!
Jennie – I continue to stand in awe of your work. This is a wonderful letter. Thank you so much for applying your brilliance and limited energy to help us all!
That was a good letter that you wrote to the panel, Jennie. I will be interested in hearing your responses to their discussion (e.g. their contention that the IOM study actually likely was not pursued “in secret”) when the transcript comes out.
On a peripheral note, I am wondering why in both this blog and in the previous one on “Case Definition Bingo,” you have repeatedly referred to the criteria proposed in the IOM report as the “SEID criteria.”
The report itself does not refer to the proposed criteria as being the “SEID criteria.” It suggests that new criteria be adopted for the disease currently known as “ME/CFS,” and then – in a wholly separate recommendation – recommends that the disease itself be renamed “SEID.”
Many people continue to have objections to the proposed definition, particularly with regard to whether it will lead to research into improperly loose patient populations rather than clear cases and also whether it will fail to serve the needs of severe patients at a clinical level.
But regardless of what definition is used, the patient community has in four different large surveys now indicated a general rejection of the name “SEID.” Here is a link to an overview on the study that I spearheaded on this topic.
http://paradigmchange.me/wp/name-results/
The results of a new survey conducted by ProHealth are linked in the blog comments. The results of studies done by Health Rising and Canary in a Coal Mine are summarized toward the end of the 526-page report for my survey, linked in the blog text.
Regardless of what happens with the definition, “SEID” does not need to be used as the name. These are separate issues.
Moreover, the results of these surveys suggest that if the government does use “SEID” as the name, it will lead to substantial unhappiness on the part of many patients who care about this illness.
Why would the government do something that will make large numbers of patients who care about this disease even more unhappy than they already are, for no particular good reason? That makes no sense at all.
I therefore think that until the government decides what it is going to do, it might be better for advocates to be using the term “proposed IOM criteria” rather than “SEID criteria.”
This would make it clear that even the IOM report did not suggest that the name and the definition must be linked in terms of their being adopted – thus making it more likely that the issue of the name and the issue of the criteria will be considered separately by all concerned.
Thanks again for writing this letter and for your advocacy work in general.
*laughs* *wipes away tears* I know you didn’t intend to be funny, but given the government’s history with this disease, your question about why they would do something that makes us more unhappy struck me as hilarious!
Ok, getting serious again. You asked why I am using the term “SEID criteria,” when so many patients are opposed to this new name. First, I’ll point out again that I don’t like the name much myself. In fact, all of the existing names for this disease have serious flaws or shortcomings. Your suggestion that I call it “proposed IOM criteria” and avoid using “SEID” seems aimed at minimizing use of SEID so that the government will be less likely to accept it themselves. I see your point. Words have power, especially in political contexts.
However, the IOM proposed new criteria and then said those criteria should be called SEID. One option for implementation is to take the criteria and reject the name, but that is certainly not what IOM recommended. Furthermore, there have been confusing statements from more than one panel member about whether they intended the proposed criteria and name to apply to all patients with ME/CFS. The name “SEID” becomes more important then, to distinguish the new criteria from the other criteria like Fukuda, CCC and ICC.
I do not believe it is inaccurate to say “SEID criteria” when referring to the IOM report. And using SEID in this way does not diminish the importance or significance of the opinions captured in the various name surveys. I certainly hope that the government’s decision making on the proposed criteria and name will be more sophisticated than simply what terms are or are not being used in the patient community.
Excellent letter Jennie! It generated some good discussion. Thanks for making me aware of this program.
Great letter, Jennie! I’m really glad they took it seriously.
Thank you for pouring your time, energy, and health into advocacy. These are marvelous letters, summarizing the essential points and bringing out how dire our situation is. I *hope* they do follow up on the program.
Another extraordinary post, Jennie. Thank you.
In a teleconference last Wed. (3/25) the CFSAC IOM Work Group invited Dr. Ellen Clayton, Chair of the IOM panel, to answer a whole host of questions we had. (We will be gathering information and formulating recommendations regarding the IOM study, recommendations, and name to CFSAC for the next meeting, which, btw, probably won’t be till June.) I asked Dr. C. if there was any reason why This Disease could not be called ME/SEID, and she said that it could be. She is very encouraging for us to use the IOM report and recommendations to further the causes that we have – funding, research, medical education, etc. She does not see it as a piece that is written in stone and is the equivalent of the 10 Commandments. What she does see, however, is a document that can help us – patients, families, advocates – get some action from HHS in our various efforts. This woman is one of our biggest advocates now and has voluntarily been speaking to the media and to groups like Solve ME/CFS and the CFSAC IOM WG.
It seems to me that a compromise name could be IOM’s SEID name in combination with ME – ME/SEID. Perfect? No. But in naming This Disease, nothing will please everyone. If we reject SEID altogether, the HHS will do even less for us in the future than they have done in the past. If, however, we use the IOM report to our advantage, which includes buying into the name the report suggests – SEID, we can press those departments at the HHS which funded this report to put their mouths where their money is, i.e., they funded this report; the panel made recommendations and reported on needs not met (research funding, medical education). The HHS departments can’t very well hide in their various closets and not do anything for us now. However, I am not naive. They will still need to be pushed to act.
If you hate the name SEID, try ME/SEID. If that doesn’t suit, think of something with the SEID name in it that does suit and put it forward; using SEID will keep the force of the IOM report behind the name. If nothing suits, then keep protesting the name of SEID and other IOM recommendations, including the criteria, without offering ways to compromise and move forward. (And continue to be stuck with CFS in the name ME/CFS.) Then you will find yourself in 2025 with no more help from the government than you get now. Saying “no” to everything gets us “no”-where, as we saw with our extremely strong objection to the IOM report in 2013. We must use this IOM report and lobby whatever departments are necessary to get more research funding from NIH, an acceptable-to-patients Toolkit on the CDC website, acceptable medical education information for doctors to treat ME/SEID from the CDC, etc.
It is necessary to move forward using the IOM report, and the name SEID, as a platform for change within the HHS and with doctors nationwide. I personally want to see hundreds of thousands more patients treated and thousands of doctors better informed. To me, that is THE goal, not a perfect name or perfect criteria, although the community can work to get both the name and the criteria improved.
Personally, I have a big problem with ME/SEID because there is no definition called ME/SEID. If we combine the two names, are we combining an ME definition (which one?) with SEID? Without data showing the patients are the same?
I agree with you on this point, Jennie. There are a number of ME definitions available to clinicians and researchers, the most recent being the 2011 Myalgic Encephalomyelitis International Consensus Criteria. The ME ICC selects a different patient population than the IOM’s proposed SEID criteria. Patients meeting the ME ICC should be diagnosed, treated, and researched accordingly.
Great letters Jennie. I didn’t realise that the ‘Jennie’ in the programme was you at first!
It’s good that you got to meet VR. His podcast format might start to open up new avenues for both publicity, and perhaps even to diagnosis itself, eventually. I have already written to congratulate him on his new case studies section of TWiP. This rather shows up the pathetic approach to diagnosis in our UK A&E departments, compared with the ER at Racaniello’s hospital. The enthusiasm with which even doctors from all around the World have liked to take part in analysing the case notes for the TWiP patients, hints that, were individual cases of other difficult patients to be posted to some ‘clearing house’ website, we could actually be flooded with useful suggestions as to how to proceed toward solving our own individual cases. The will and enthusiasm is out there, and we should be trying to drag medicine into the 21st century and make it use the amazing technology that is being almost completely shunned by the antiquated medical professionals the ordinary patient is forced to deal with.
(Hope this makes sense: I can’t see what I’m writing, on my BlackBerry! )
keep it up: wishing you all the strength you need!
xx
Pingback: ‘This Week in Virology’ | ‘such a good conversation about ME/CFS’ | 29 March 2015 | ME Association
Jennie, great stuff–helping to keep things clear and sane in a pretty mad world. But you need to take a rest before the P2P final report is released–that may stir things up again, though we won’t know that for a while yet.
Best, Chris
Good for you for writing them! When I heard that podcast, I was completely taken aback. That is because Vince Racaniello let Dave Tuller publish an interview with me on the blog a very considerate of him – after the New York Times said he couldn’t ‘t because I had asked that something personal, and totally irrelevant to the disease, be taken out. Dave and I had met for lunch in Baltimore, and I didn’t realize at first I was being interviewed. We had, I thought, become friends in the course of my explaining the labyrinthine history of this disease.
At any rate, although I had tested positive for XMRV by both PCR and antibody testing in the 2009 Science article, I remained skeptical of what was found for a number of reasons – and the point I was trying to get across to Dave was it just didn’t matter whether I had a retrovirus – I was plagued by immune defects and viruses, and that should have been enough information. I thought. Why did it have to be a retrovirus?
In particular, this was not long after I had a spinal tap in July 2009, when Dr. Peterson found active HHV-6 (probably A because I had a raging infection with HHV-6A in general) and Cytimegalovirus (CMV). Both of these viruses are neurotropic and can cause encephalitis, and I had symptoms of at least encephalitis. It all made sense.
But when I said this to CDC (higher up than the CFS group), I was told curtly that “You people show positive results for diseases you don’t have.” Now, that’s the second time someone from the government has just bluntly dismissed the results of my viral testing – earlier, the late Steve Straus at NIH had interrupted my testimony at CFSCC about how I was found to be positive for HHV-6A and the 37kDa Rnase-L by Dharam Ablashi. Straus stood up and said I never had HHV-6 at all because inky 3 people in the country knew how to diagnose it (I am guessing that this was a not-very-veiled insult directed at Connie Knox). After getting over my shock that I had been interrupted (remember, we don’t get that much time to talk), I responded that Dharam Ablashi did all my testing as part of an ongoing research project, but if he wanted to come up to the mike and read into the testimony that Ablashi, the co-discoverer of HHV-6 and its two variants while at NCI working on AIDS, did not know how to test for it, he was welcome to do so. Straus turned bright red and stalked angrily out of the room. (Believe me, you couldn’t make this stuff up.)
I eventually learned that these bureaucrat/scientists in NIh and CDC simply did not “believe” a person could have a chronic viral infection. Either it would kill you, or you’d disable it. So this was not really about science. It was about what they “believed.”
A true scientist – a GOOD scientist (like Ablashi), would not disregard the evidence, but instead ask why this was so. Certainly they wouldn’t laugh at it.
But here was this guy Dickson (so?) laughing at chronic fatigue syndrome. Every time the word exercise was mentioned he chuckled (I’d hate to hear his response to “exertion intolerance”). He gave his OPINION that “these people” we’re in effect self-diagnosed. Racaniello corrected him gently and said the patients in the Lipkin study were wel
I’m sorry – my I-Pad froze at the end of my last post, and I could not complete it or edit it (noticeable by all the typos).
Jenny, you did a great job.
But it was very frustrating in BOTH podcasts to hear someone – I think it was Dickson – say “oh, I don’t believe that.” Example: he didn’t believe the IOM would act in secret. He didn’t believe we were underfunded by NIH. He didn’t believe … Almost anything that YOU said that HE hadn’t experienced, even though he LOVED your letter.
And that’s what frustrates me. I had classic symptoms of encephalitis and two viruses in my spinal fluid known to cause encephalitis and wreak havoc in your nervous system – but nobody at NIH or CDC “believes” that.
Once I was telling a student about how I became very cynical about education and my own future after I realized that I would not be allowed to apply to Princeton, Columbia, Yale, even University of Virginia – and that those schools that did admit women (Harvard via Radcliffe, for example) admitted four times as many men. Make students with much lower GPAs and SATs than mine breezed into those schools, while I looked inside through a closed window.
A male colleague walled by and laughed and said, “Oh, I don’t believe that!”
Which part? That Princeton and University of Virginia did not admit female students in 1968? Look it up! Or that I would be discouraged and embittered by that (he knew me years later as a successful Ph.D. who was not embittered or discouraged – he didn’t know the “me” who dropped out of college because I saw no reason in remaining …)
Now, that little hurt, that slap, that loss of dignity – hard to put into words how I felt at that moment –
That is how I feel every time they laugh and say, oh, that’s not really so. That’s not what happened. You don’t have those viruses. There’s no such thing as low molecular weight Rnase-L (until men with prostate cancer showed up with it). They probably did that test wrong. Hahahahahaha.
The transcript doesn’t include the chuckles.
Those two disparate parts of my life are connected for me today because of the death – after three decades of terrible suffering – of noted feminist scientist Naimi Weisstein. Find a chuckle in that, guys. I can’t.
At any rate, I admire your courage and clarity in your responses to the TWIV team. Well done.
I may write and suggest they read the following transcript of a much earlier TWIV episode:
http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
Thank you, Jennie, for your perseverance and determination on our behalf, and for your excellent summary of the program and your letters.
I’m actually surprised that after the IOM’s panel wrote their lengthy report and
came up with such good information and recommendations, that our disease is
still not taken seriously by some people. Who is Dickson anyway? Doesn’t he
understand the IOM report or its summary?
I was lucky in that ny internist diagnosed CFS when I first got sick after
having had a flu illness. He took tests and found the EBV titers high, my
liver and spleen enlarged. I later did actually get a type of hepatitis from
the liver involvement with EBV. But he told me I had CFS when the illness
went into a chronic phase.
Also, what doctors don’t believe the viruses can be chronic? People with
Herpes 1 and 2 have a chronic virus, which has periods of activity and
dormancy. I have friends with these viruses and have heard all about this.
Thank you again for your determination and hard work.
Dickson Despommier is a professor emeritus at Columbia, and spent his research career on parasitology. He does not know a great deal about ME/CFS, but that’s not surprising. I actually was not offended by his remarks on the first show because he spoke from lack of knowledge, not bad intentions.
I’m not sure the other co-hosts were familiar with the IOM report but why would they be? The Lipkin paper was not the focus of the episode, and they were not attempting to go in depth on ME/CFS. I’ve listened to the show for years, and I have found the group to be open to data and other perspectives. They readily admit their mistakes and have thanked people for correcting them. Vincent does have a genuine interest in ME/CFS and I hope they continue to cover it.
I’ve listened to most of the TWiV, TWiP, and TWiM podcasts, and can vouch that Despommier is a greatly compassionate person, and the most environmentally aware man on the panel. (The other members often pull his leg about it.)
The show is meant to be just a conversation, and they often end up talking about subjects they had not started out to talk about, and ones where they are really ‘feeling their way’ to get a better understanding. They rely on listeners like us to point out their mistakes and to help them learn more. It is a brilliant idea: but the occasional listener might not appreciate how it works.
The team didn’t really have to comment on the IOM report at all, as it is not really meant to be a medical podcast so I think we were lucky that they chose to discuss it and give us some wider publicity among their science-savvy listeners.
It was Alan Dove who gave his rather uncritical support to the HHS, not Dickson. Dove is a journalist, and more of a skeptic than the rest of the team, but is, nevertheless, very knowledgeable. I’ve written to point out the trouble Jeanette Burmeister had getting info out of the HHS, as an example of how uncooperative they can be. It will be interesting to hear if he apologises as genuinely as Despommier did. But we shouldn’t really expect a lengthy debate, as it is not really what a virology podcast is for.
Well said, Steve. I actually think it was very fair of Alan to want to see proof before accepting my allegation that HHS pursued the contract in secret. I tried to provide more context in my follow up, and I’m very glad you wrote in about Jeannette’s lawsuit. As advocates, we have to be very careful to confine our comments to what we know to be true and can prove. If I was actually making up the “in secret” thing, Alan would be right to call me on it. *I* would call me on it.
Cheers Jennie,
I think that Racaniello has hit a ground-breaking format with this TWi series, and if it could catch on with the medical sciences, and even diagnosticians, there might be a chance of changing the whole way that science and medicine are conducted.
They sometimes mention that there are medical podcasts as well, but I’ve not looked for them. If they could start to break down the doors of the medical profession’s closed shop, then we would really be on to something. Unfortunately, unlike with the Racaniello ‘team’, I find that doctors and shrinks just take offence at anyone who disagrees with them, and there, dialogue stops. Let’s hope some of them catch on and take a leaf out of the TWi book. (y)
Jennie, I’m an advocate because my daughter is suffering with ME. I am so appreciative about your wonderful reporting. Most of the scientific discussion is difficult for me to follow, but other than that, the clarity of your reports as well as others, is marvelous. Thank you from the bottom of my heart for your wonderful advocacy. 🙂
Jenny,
Your letters are super. I shudder to think how much of your precious time and energy they take, seeing the quality. Thank you.
I’d like to impart a history lesson for the benefit of Billie Moore and other ; I’m afraid that a lot of people share her well-intentioned thought that:
“If we reject SEID altogether, the HHS will do even less for us in the future than they have done in the past. If, however, we use the IOM report to our advantage, which includes buying into the name the report suggests – SEID, we can press those departments at the HHS which funded this report to put their mouths where their money is, i.e., they funded this report; the panel made recommendations and reported on needs not met (research funding, medical education). The HHS departments can’t very well hide in their various closets and not do anything for us now.”
Billie, that’s what the Judenrat thought. That’s why they got the Jews all lined up so nicely to go to the camps, with their little suitcases in hand to spend a bit of time in the East. That’s why they the Judenrat did their little deals and compromises.
There’s an easy mnemonic to remember this lesson: Auschwitz.
We’ve been nice little girls and boys in respect of HHS and CDC for 30 years now. And what are we now? Barely alive. Or dead.
When did Fauci start to listen to the AIDS people? When they labelled him “killer” in public, threatening to do in his career. Fauci said so himself on telly last Sunday.
Deborah, Holocaust analogies are not welcome on my blog. I think I understand the point you are trying to make, that we should not go along with the IOM report or HHS and hope for the best. And making that point is fine. But please find another way to do so without drawing parallels to ghettos, death camps and the pure evil of the Holocaust.
p.s. Never believe that garbage NIH and scientists throw out about there not being enough money. Take a close look at what Collins and Fauci spend on. $251 million in 2014 to re-jigger the clinical trials formats for AIDS, the medical equivalent of re-arranging the deck chairs on the Titanic. $71 million for adjuvant research. So Merck and Glaxo won’t have to hurt their profits by paying for it. $41 million for placenta research. Sorry that puts unimplanted oocytes ahead of your life and mine. How much for big abstract orgies of spending on “the brain” “personal medicine.” Sorry, let’s save the lives of PWME first.