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FAQchecking

November 18th, 2013

FAQ ButtonSo We Had Some Questions . . .

For the last few weeks, there’s been a rumor that HHS might actually respond to questions about the Institute of Medicine study. PANDORA urged HHS to address specific questions about the contract during phone calls and emails with HHS officials. The CFIDS Association also “contacted the CFSAC urging them to respond to a myriad of questions,” although they provide no other details about the context of that communication or the questions submitted.

In addition to the efforts of these two organizations, HHS has been buried in a deluge of organized petitions, letters signed by more than two hundred (combined) experts and advocates, and individual emails and letters.

The overall response to this deluge? A brick wall of silence. Since the announcement on September 23rd and the release of the Statement of Work on September 30th, HHS has officially said nothing about it. There have only been individual communications between IOM or HHS employees and advocates. Until now.

On November 15th, an email titled “FAQs Regarding the IOM Contract” went out via the CFSAC listserv. The email has been published in its entirety in a variety of places, but the CFIDS Association posted it first. I encourage you to read the entire document, but here are my standout raising-more-questions-than-answers-FAQ-moments.

TL;DR (Too Long, Didn’t Read?)

  • The IOM study is aimed at the wrong target audience.
  • They think they’re implementing a recommendation but they’re making it worse.
  • They don’t explain why HHS can’t adopt the CCC.
  • They ignore one of PANDORA’s most important questions.
  • They contradict their own written descriptions of the NIH workshop.

But Who Is Answering?

Some people have questioned the authorship of the document (with good reason), specifically whether the CFSAC itself wrote or approved this document. Although the FAQ is not signed, I think we can safely assume that most CFSAC members had nothing to do with it.

How can I be so certain? Because if the CFSAC approved such a document – even if the vote was by email – it would be a violation of the Federal Advisory Committee Act which requires all meetings of the full Committee (electronic or otherwise) to be held in public. Given the Public Citizen smack down of the Committee for a similar violation earlier this year, I think that the CFSAC staff are more careful about these things.

The CFSAC listserv has become an all-purpose communication tool, in part because it is an effective way to get information out to the interested public. Announcements on behalf of other agencies, such as FDA meetings or CDC PCOCA calls, are routinely disseminated this way, although frequently days or even a week after we’ve already found out.

I think it is reasonable to assume that these answers were drafted by Dr. Nancy Lee and her staff, and sent out through the CFSAC listserv without even consulting the full committee. That is, of course, the pattern at the Office of Women’s Health. The entire IOM contract was conceived and developed by HHS staff, with only ONE member of the CFSAC consulted early in the process for input (and told to keep it confidential). I would be very surprised if something as sensitive (and rare) as public statements from HHS about the IOM contract were previewed or approved by the CFSAC itself. This is an HHS staff statement.

The Wrong Target Audience!

clipartdoctorThe first question of the FAQ is “Who is the target audience for the Institute of Medicine (IOM) study?” This was not one of the questions posed by PANDORA, and hasn’t really circulated in advocacy circles, so I’m not sure why this is the first question answered. But the answer is disturbing: the target audience is primary care providers because they don’t know how to diagnose ME/CFS, and patients have to see lots of doctors to finally get the diagnosis.

On the face of it, this seems reasonable. After all, my primary care doctor, and the first two doctors he referred me to, all failed to properly diagnose me.

But my primary care provider can’t diagnose cancer either. He might know I had a malignancy, but he would immediately refer me to an oncology specialist for diagnosis and treatment. My primary care doc can’t definitively diagnose artherosclerosis or rheumatoid arthritis or multiple sclerosis, either. He could suspect any of those diseases, maybe even screen me for them, but then my doctor would refer me to the cardiologist, rheumatologist, or neurologist best suited to diagnose the disease.

Saying that primary care physicians should be able to diagnose ME/CFS rests on two assumptions: that there is no medical specialty better suited to make the diagnosis and treat patients; and that ME/CFS is not so complex a disease that it requires care beyond what a general internist can provide. WRONG and WRONG.

I want primary care providers to know enough about ME/CFS to recognize when someone may need to be carefully evaluated for it, to know what tests might be helpful in screening, and to know which specialists are best suited to make the final diagnosis. A clinical case definition can help with this.

But I absolutely oppose the assumption that all we need is a quick checklist that any general nurse practitioner can use to label someone with ME/CFS and send them on their way to physical therapy. NO.

We Can’t Workshop Because . . . . ?

The October 2012 CFSAC recommendation states that HHS should convene a workshop of ME/CFS experts to reach consensus on a case definition beginning with the 2003 CCC. PANDORA asked why HHS could not convene the workshop and turned to the IOM instead.

In answering, HHS says it relies on professional societies and institutions like the IOM to develop guidelines and recommendations, and then disseminates those guidelines. HHS also says that making a clear distinction between clinical diagnostic criteria and a research definition will improve clinical care and research.

Never mind that the recommendation said that HHS should sponsor a meeting, not create a definition by itself. Never mind that the recommendation said that a single case definition for research, diagnosis and treatment was needed, not separate definitions. So not only has HHS not followed the recommendation, it has still not explained why.

But rest assured! The October 2012 recommendation has been addressed! The FAQ says, “as a direct result of the CFSAC recommendation, HHS’ contract with the IOM requires it to host public meetings and to include in the expert advisory committee ME/CFS experts (which could include members of CFSAC).” No, actually not. This contract only requires one public meeting, and we have no guarantee or information about meeting content.

And did you notice the last part of the sentence? As a direct result of the CFSAC recommendation, the IOM study will include ME/CFS experts which could include members of CFSAC. Several members of the CFSAC roster have been nominated to the IOM panel, including Dr. Levine, Dr. Marshall and Dr. Fletcher (all nominated by PANDORA).

In my opinion, even CFSAC members who are recognized experts in ME/CFS clinical care and research like Drs. Levine and Fletcher should not be on the panel. There has been so much rancor, division, controversy, and disagreement in CFSAC about the case definition recommendation, both publicly and privately, that I believe CFSAC members are biased on the issue. That’s just my personal opinion, but I will oppose the appointment of any current CFSAC member to the panel.

Why Not CCC?

PANDORA asked why HHS could not adopt the 2003 CCC, especially in light of the letter from the 50 experts to Secretary Sebelius. The answer? HHS can disseminate but not endorse guidelines made by nongovernmental groups and besides, the CCC is ten years old. I’m not buying it.

The Institute of Medicine is a nongovernmental group. That’s the POINT. Remember how I pointed out that the government cannot use IOM recommendations if it exerted influence over the development of them?

Yeah, so . . . . the government CAN and DOES both endorse and enact recommendations coming from nongovernmental organizations like IOM. Actually, they do it all the time and not just with IOM.

For example, Dr. Koh recently said that HHS was implementing recommendations from an IOM report on epilepsy that was co-sponsored by federal agencies and non-profit groups. The CDC recommends the American College of Rheumatology’s criteria for diagnosing fibromyalgia, and refers people to the Lyme disease treatment guidelines from the Infectious Disease Society of America.

In all three cases, HHS is endorsing recommendations and guidelines created by nongovernmental groups, not merely disseminating them. I’m sure HHS has its reasons for refusing to adopt the CCC, but those reasons are not the ones offered in this FAQ.

I Could Drive a Truck Through These Holes (if I could still drive)

One of PANDORA’s questions was, “Can the IoM contract be canceled? If not, why not?” The FAQ does not answer the question.

Instead, the FAQ answers a different question: “If the IOM contract is cancelled, will the contract funds go to ME/CFS research?” HHS says, “There is no way for HHS to recover or repurpose these funds.” Fine, but that’s not what we need to know.

First, where did the funding come from? Did it actually come from NIH’s research budget? I assumed the answer to that was no, and that there was never a chance that the money could be used for research regardless of what happened to the IOM contract.

Second, IOM says that HHS and the Social Security Administration funded the study. This FAQ says, “Almost all of the agencies that have efforts involving ME/CFS contributed Fiscal Year (FY) 2013 funds to this study.” Presumably this means HHS agencies, but it still does not tell us which agencies and how much they contributed. I would like to see the full breakdown, and I’m hoping that one of my FOIA requests will provide it.

Another question from PANDORA was completely ignored in the FAQ: “[W]hat guaranteed [sic] can you give that [IOM] won’t come back with something more broad, and thus more harmful, than Fukuda?”

THIS is the question we all want the answer to. In fact, it is arguably the MOST IMPORTANT question of all.

Answer?

*insert sound of crickets chirping here*

The Shifting Sands of NIH

From the very beginning, advocates have been concerned about how multiple case definition efforts would be coordinated. At first, we were worried about the CDC multi-site study and the scope/coordination of the NIH Evidence-based Methodology Workshop (EbMW).

Our concerns were heightened after the announcement of the IOM effort, and alarm bells went off in my head when the Statement of Work said that IOM should coordinate with EbMW “to minimize overlap and maximize synergy. . . [and] assure that relevant information is shared and that key messages are coordinated.”

The FAQ attempts to address this by quoting an unnamed person at NIH:

The expected outcome from the Evidence-based Methodology Workshop for ME/CFS is to identify research gaps in ME/CFS, identify methodological and scientific weaknesses in the ME/CFS field, suggest research needs that will advance the ME/CFS field, and move the field forward through an unbiased, evidence-based assessment of this complex public health issue.

Do you notice what is MISSING from this description of the EbMW? There is nothing in there about a research case definition.

Which is funny, actually, because in a statement on the CFSAC listserv on September 3rd, HHS said “NIH will be convening an Evidence-based Methodology Workshop, which would address the issue of case definitions appropriate for ME/CFS research“. (emphasis added) The same description appeared in the CFSAC listserv announcement on September 23rd.

That phrase – “address the issue of case definitions appropriate for ME/CFS research” – seems to have originated from Dr. Koh’s written statement to the CFSAC in May 2013 describing the EbMW.

Despite all these statements in writing that the EbMW will address the issue of case definitions for ME/CFS research, this FAQ now (presumably) quotes someone (presumably) at NIH as describing the EbMW in a way that does not even mention the case definitions appropriate for ME/CFS research.

Any number of possible explanations come to mind: the EbMW purpose and approach has shifted; Koh’s written statements about the EbMW were wrong; this FAQ is wrong; different people at HHS have different understandings of the EbMW, some or all of which are wrong; this is an attempt to mislead the public; or no one has any idea what they’re doing.

HeadScratchingCartoonI Have Ninety-Nine Questions, And This Answers None of Them

I am becoming accustomed to written statements from HHS that add to the questions I have, rather than actually answering any of them. This FAQ document is just another example. According to the draft agenda for the CFSAC meeting on December 10th, Dr. Lee will discuss the IOM study for 30 minutes. The agenda does not indicate whether the Committee members will be permitted to ask questions or comment.

One can only hope that Dr. Lee’s presentation will clear up the confusion and address the long list of concerns about the contract. This FAQ has not succeeded in doing so.

Denise Lopez-Majano assisted with research for this post.

 

  1. floydguy
    November 18th, 2013 at 09:20 | #1

    The Obamacare task force must also be working on this debacle. So we currently have:

    - Fukuda
    - Oxford
    - Reeves
    - CCC
    - ICC

    And now HHS wants to add another one that they will promote to every Nurse Practitioner and MD in the US. As you noted, it will be so simplified to be useless. There are so many questions but I think one of the biggest is how they will reconcile all these “definitions”. Adding another one without eliminating others is going to add to the confusion. For example, what happens if somebody is diagnosed under ICC or CCC but doesn’t meet the criteria for the “IOM” definition?

    The Feds still don’t get (or prefer to ignore) the complexity of this disease. They continue to make the situation worse.

    At this point, it seems highly likely that this is a political exercise; perhaps some kind of promise to the insurance companies during the Obamacare negotiations. The other obvious question is why now? The Feds complain about not having the budget for purchasing airline tickets yet miraculously pulled $1MM out of their pocket overnight during a debt ceiling crisis. The next miracle will be conjuring up another $5MM+ to promote the nonsense they’ve agreed to from the “consensus” exercise. And then telling us that they’ve spent X dollars to “help” us.

    • Jennie Spotila
      November 18th, 2013 at 09:33 | #2

      You raise a really important question: what happens to the other definitions?

      I am going to guess that HHS wants to use the IOM definition to replace Fukuda and Reeves. I also expect that they think it will replace ICC and CCC. But as you say, what if someone fits under CCC or ICC but not IOM? That seems unlikely, if we assume that IOM will be more general than CCC or ICC. But will the specialists use the IOM definition? Will the IACFS/ME endorse it? It’s too early to say for sure. I suppose it’s possible that HHS will use IOM and the specialists could stick with CCC or ICC. That’s pretty much what we have now – HHS uses Fukuda/Reeves, and the specialists use CCC.

  2. Firestormm
    November 18th, 2013 at 09:56 | #3

    Thanks Jennie. Lots to think about in this analysis. What are you own thoughts about the CCC being 10 years old and the implication that it hasn’t kept up with research and that any clinical criteria would be in need of validating/operationalising (as was mentioned by CFIDS Assoc America)?

    • Jennie Spotila
      November 18th, 2013 at 13:05 | #4

      I don’t think the age of the CCC is automatically a disqualifier. I think, though, that it should be assessed in light of all of Dr. Jason’s subsequent work, and the ICC should also be examined. I also think that decision science could be brought into the mix, in order to consider the best way to create/revise criteria so that it is useful in clinic. What does a GP need to see (symptoms? test results?) in order to refer the patient to a specialist who can consider the ME/CFS diagnosis?

  3. Justin Reilly
    November 18th, 2013 at 12:15 | #5

    You are right that the definition should not be dumbed down so that every primary care practitioner can make an ME diagnosis. Just as specialist referrals and specialist tests are needed in diagnosing MS, cancer and other serious, complex diseases, they need to allow for that with ME.

    Can you say more about why you think every CFSAC member is biased. I think we need to choose our battles and fight this contract and the appointment of non experts, not object to experts bc they are on CFSAC.

    I am pretty sure the following is all accurate, but my memory is not the best:
    At the last CFSAC, Nancy Lee, gave a presentation on the NIH ebmw and she described it similarly to how the FAQ just did- a workshop to identify gaps in the study of ME. Someone asked if a new definition was a goal for the workshop. She said no. The person then asked if a definition might inadvertently (or something to that effect) come out of the workshop. I think she said she didn’t know.

    • Jennie Spotila
      November 18th, 2013 at 13:36 | #6

      I agree we need to pick our battles. In terms of the CFSAC members, the October recommendation passed but barely. If you recall, there was a separate vote on whether the recommended workshop should be comprised of ME/CFS experts and the vote was 5-4 with one abstention (Dimitrikoff). My information is that there has been substantial disagreement and discord between members ever since. It has become toxic, in my personal view, and we saw some of the fireworks at the May 2013 meeting. Personally, I don’t want those dynamics to seep into the IOM panel.

      Regarding Dr. Susan Maier’s presentation about the EbMW at the May 2013 meeting, here is some of what she said (from the minutes):

      The case definition issue is part of the workshop. The purpose of the workshop is to evaluate the research evidence surrounding the multiple case definitions and to address the validity, reliability, and ability of the current case definitions to identify individuals with the illness, identify individuals within the subgroups with the illness who can be differentiated by a case definition, and/or to identify responders or non-responders based on some element of the case definition as informed by the evidence. This is all used to advance the research. It’s really an analysis of the science that supports the case definitions in the sense that the outcomes are telling us something or the outcomes are not telling us something. Where are the gaps? Where does the evidence show up? Where does it not?

      The evidence that will be collected and reviewed by AHRQ will have within each of the studies which case definition was used, if any. The evidence is based on whatever has been out there and used. There will be evidence related to the International Case Definition, evidence related to Fukuda, evidence related to all of the different case definitions. The purpose of the workshop is to assess the evidence related to all of the case definitions and see where there may be opportunities to modify or to understand better how those case definitions predict.

      The goal of the workshop is not to derive a new definition. The goal of the evidence-based methodology workshop is to understand and identify how the evidence shows up for case definitions, for outcomes, for interventions, and for treatments. If it turns out that some interventions have more impact or a more positive outcome for post-exertional malaise, then we’re going to know that post-exertional malaise in a case definition is probably going to be a good thing to do. The workshop is not advocating any specific case definition. It is simply a method to review it, to understand where the evidence shows up, where the gaps are, and where we need to move forward.

  4. Ess
    November 18th, 2013 at 12:44 | #7

    Excellent reporting and QUESTIONING on these FAQ’s, Jennie!!

    The effort and work AGAINST getting to the scientific answers AND, therefore, getting the MILLIONS of persons WORLDWIDE–MEN, WOMEN, TEENS and, yes, CHILDREN–with ME/CFS back to health and living our lives ‘productively’ is like . . . a neverrrrrr-ending soap opera.

    Makes one wonder WHO is the LEAD WRITER in this story–WHO is calling these SHOTS . . . WRITING the SCRIPT and hiring the actors to carry off this HEALTH CRISIS DEBACLE??

    AND in the end–the TRUTH DOES come out–AND the VILLAINS ARE made accountable. Keep up with those excellent questions and probing, Jennie . . . many thanks!!

  5. AJ
    November 18th, 2013 at 13:54 | #8

    So how exactly is this going to help people with ME? More confusion and obfuscation. How on earth can non-experts judge the severity of this disease and differentiate between subgroups. Even the experts can’t do the last. This IOM contract is a disaster. Just have look at the report on GWI and it’s clear where this is heading: http://books.nap.edu/openbook.php?record_id=13539 (esp. p. 22 and p. 98-100 are rather illuminating).

  6. November 18th, 2013 at 14:32 | #9

    Last count there was 1 definition for ME/CFS, 5 for ME and a dozen for CFS. IMO we don’t need another definition or set of criteria. I think it is very unlikely that we are talking about 1 disease, so another theoretical definition or set of criteria will only add to the confusion. The signs of infection in the blood and spinal fluid that Lipkin and others before him found, the double exercise test, tilt table test, … should be a better starting point to come up with a set of physical tests than another list of vague criteria. I would prefer they would stick to Fukuda CFS (most research, even biomedical) and the CCC ME/CFS (better) until they find a better way to diagnose us.
    PS: If I had the money I would fund some research into survivors of the original ME-epidemics (Ramsay criteria) to see where they fit in.

  7. Billie Moore
    November 18th, 2013 at 21:35 | #10

    Jennie, another cogent analysis of this issue, and thank you for all the time it takes you to do these commentaries.

    I do have a question about your comments on CFSAC members. Many people nominated to the IOM panel were also opposed to the IOM contract and signed the experts’ letter. Why single out for opposition those who are also on CFSAC? If we were to oppose the nomination to the panel of anyone who opposed this contract, we would be eliminating just about all the experts we would like to see ON the panel! Please rethink your opposition regarding CFSAC members. Mary Fletcher, particularly, would be a huge asset to the panel because she speaks up and defends the patients, good research, etc. Susan Levine, while absolutely on our side, rarely says anything. However, she should not be opposed either. We need them all.

    I do think that we are viewed by the highest levels of the HHS as just a group of malcontents who are a nuisance, and not a very important nuisance at that. We really do need concerted Congressional action on this issue. The non-responses from all HHS depts. – but particularly from Sebelius and Koh – is an outrage and insulting to millions of Americans – patients, family members and caregivers, and their medical care providers. So I intend to send this FAQChecking blog (sans comments) to my Congressman and both my Senators and urge everyone reading this to do likewise (with some background information so they know what the basic issue is). We will NOT get help from Sebelius, Koh, Lee or Bond, Unger, etc.

    Regarding whether the NIH had a hand in funding the study. This quote suggests that it certainly might have funded part of it; it cannot be assumed the NIH did not contribute to the funding: “Almost all of the agencies that have efforts involving ME/CFS contributed Fiscal Year (FY) 2013 funds to this study.” In fact, I would assume just the opposite, since the NIH has in its budget funds for ME/CFS. (Might as well blow 20% of the 2013 budget for ME/CFS research on a worthless study as on real research! Those people with ME/CFS don’t matter anyway.)

    Billie

    • Jennie Spotila
      November 18th, 2013 at 21:50 | #11

      Billie, I am honored that you think this piece is worth distributing to Congress and others. Thank you!

      Regarding CFSAC members on the IOM panel, I am not saying that Mary Ann Fletcher or Sue Levine should be excluded because they signed the expert letter! I don’t think any of the 50 signatories should be banned just because they signed.

      However, the disagreement among the voting CFSAC members over the case definition recommendation and process has been vehement in public and even worse behind closed doors. I don’t think they can just set that aside automatically. That goes for members on both sides of the issue.

      We have so many experts! My preference would be to choose from those who have not been involved in the CFSAC drama for the last year or so.

  8. Ess
    November 18th, 2013 at 22:03 | #12

    YAHOOO—say it LOUD and say it CLEAR–Billie Moore and Jennie–great work :)

  9. Deborah Waroff
    November 19th, 2013 at 05:48 | #13

    Interesting question of law whether IOM is a government body. It gets more than 50% of its money from the federal government and is part of the NAS, which gets more than 85% of its money from the federal government.

  10. Ess
    November 19th, 2013 at 13:02 | #14

    At this link re Insurance Companies / psychiatrist / doctor connection with a bias re ME/CFS.

    http://www.lawyersandsettlements.com/articles/denied_disability/interview-wrongly-denied-disability-claims-insurance-7-19260.html#.UoT2zvlEKR1

    see the SECOND COMMENT posted by Nancy B., November 16, 2013

  11. floydguy
    November 19th, 2013 at 15:48 | #15

    @Deborah Waroff

    Most likely they are not legally part of the government. It would seem that is the whole point of the organization: making decisions, er recommendations, outside of the normal constraints of government bodies. I don’t see where money comes into it. There are plenty of “non-public” organizations that are more on the public dole than IOM such as Raytheon, Mitre, Boeing, Booz Allen, etc.

  12. Valerie
    November 22nd, 2013 at 14:18 | #16

    Hey Jennie,
    Nice work; and it seems to all be common sense. It is unfortunate that common sense is not all that common.
    Thanks.

  13. floydguy
    November 23rd, 2013 at 08:10 | #17

    Jennie Spotila :
    You raise a really important question: what happens to the other definitions?
    I am going to guess that HHS wants to use the IOM definition to replace Fukuda and Reeves. I also expect that they think it will replace ICC and CCC. But as you say, what if someone fits under CCC or ICC but not IOM? That seems unlikely, if we assume that IOM will be more general than CCC or ICC. But will the specialists use the IOM definition? Will the IACFS/ME endorse it? It’s too early to say for sure. I suppose it’s possible that HHS will use IOM and the specialists could stick with CCC or ICC. That’s pretty much what we have now – HHS uses Fukuda/Reeves, and the specialists use CCC.

    It could become more common if the “experts” begin focusing/diagnosing with ICC. ICC doesn’t regard “chronic fatigue” as a primary symptom/marker. It’s a major difference of all the other criteria.

  14. November 24th, 2013 at 01:16 | #18

    Grrr…this is the one post of yours I’ve been waiting for every since those infamous FAQs came out and the one my RSS reader missed (a problem on my end)!

    The big question of mine that didn’t get answered by the FAQs (and which I would never have expected to be answered so auspiciously anyway) is why the hell bother with the IOM study when CDC has this giant (by ME/CFS standards at least) study that will basically address many of the questions the IOM study is supposed to be addressing and is set to come out (if memory serves — which it quite often does not) about the same time as the IOM study? I appreciate that the CDC study is only one study and by itself answers nothing. However it will be providing (or should be, given the clinicians who are choosing the patients) the data that everyone (mostly correctly) keeps whining is lacking in CCC. Why not just wait until after the CDC study to refer such a supposedly “controversial” issue to the IOM? It’s the whole reason I couldn’t get worked up to bother with the “adopt CCC now” campaign; I assumed HHS would refuse to do anything until after the multi-site study. So why this IOM study all of a sudden?

    I so want to find some bone to throw HHS at this point. As you (in an earlier post) and Billie (above) point out, HHS probably finds our community to be annoying as hell and many times I don’t blame them. The rhetoric of late (to say nothing of the almost weekly petitions and campaigns) has been so hyperbolic, over the top, and (quite often) unsubstantiated that I cringe at almost every fresh Co-Cure digest. But so far the only bone I can find to throw HHS is gross incompetence with a dash — but only a dash — of sympathy for how much of their time the ACA must be taking. Seriously. Gross incompetence is the most generous I can be at this point. And normally that’s my answer to conspiracy theories: yes, people ARE that stupid. But there is something in this IOM debacle that stinks to high heavens, yet I can’t find my way through the ever-present fog to figure out where it’s coming from. Surely Dr. Lee is too smart to think a 30-minute webinar is going to fix this, right? And if Dr. Maier is upset that people have called her stupid (which I doubt she is), how does she think anything she or Dr. Lee have done since this fiasco began will have changed that opinion? If, as Dr. Lee said, Sec. Sebelius wants a definition for this disease from the medical community, why not embrace CCC? Would it make a difference if the CCC had come from the IACFSME instead, as most disease definitions usually come from the professional/disciplinary body responsible for treating the disease? It’s hard not to infer that because HHS absolutely will not accept CCC that it wants a definition that still embraces a psychogenic (or “biopsychosocial”) model — or is, at least, vague enough to include it. But, I don’t want to infer. I want an explicit answer. That’s the point of science and empiricism and all that.

    Sorry to rant in your comments section. Like you there are so many, many questions that have not been answered by these useless FAQs. Unlike you, I can’t seem to break through the all- encompassing fog to string together a considered, intelligent piece about it (or, when I do have a break in the fog, I have to use the clearing for basic survival, i.e. housing or food-stamp recertification, playing mediator between the GPs office and the pharmacy, etc. — my mini rant here, aside). The big problem with this IOM fiasco is that there is no simple narrative so that it makes enough sense to those outside our community that they actually want to do the digging we cannot. Even my boyfriend’s eyes glaze over when I try to explain it to him and he has more incentive with regard to my health care than the average person.

    Lastly, with regard to @floydguy above, while I think the general point of your comment about the blurring of lines between the corporate world and the US government is spot on, in the case of the National Academies of Science (which includes the IOM), it differs from Raytheon, Boeing, or Booz Allen in that it is 1. a non-profit organization and 2. was created by an act of Congress and its charter signed into law by Abraham Lincoln in 1863 to be a non-partisan organization that informs the US government on scientific matters (back in the day when everyone thought science was apolitical — an opinion an unfortunate many still believe). This might seem like a technicality, but technicalities like this matter, and I’ve seen precious many of these sorts of technicalities dispensed with in the discussions about the IOM contract in our community (i.e. that the IOM already “endorses” a psychogenic model of ME/CFS, when IOM doesn’t “endorse” anything but rather it’s the committees the IOM facilitates that do the endorsing. It’s the assumption that IOM uses only the best of the best on those committees that gives an IOM report its stature. Of course, an IOM committee had never issued a disease definition before the recent disastrous foray into GWI/CMI.). And don’t even get me started on technicalities that have been abandoned among PWM/C when it comes to science…

    • Jennie Spotila
      November 24th, 2013 at 11:04 | #19

      Awesome rant, Michelle! ;-)

      Your question about why not wait for the multi-site study to conclude is an excellent one. Advocates have asked and asked until we’re blue in the face why there are THREE definition efforts – CDC multi-site, NIH Evidence based Workshop, and now IOM. The IOM statement of work provides that IOM coordinate with NIH and CDC efforts, but how they will do this has remained vague.

      The gross incompetence of at least some people at HHS is harder and harder to believe. I understand why people go to conspiracy theories. It seems easier to believe in a conspiracy than to believe that anyone could be so irretrievably bad at their jobs.

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