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Institute of Medicine (IOM) Government Contract
Call for Investigation by the Inspector General of the IOM's Conflict of Interest With Respect to ME
Thread starter Nielk
Jeannette Burmeister
Burying the OIG with complaints is a sure way to look crazy and not be taken seriously. There is a responsibility here to the bigger community not to harm the current effort because it is, I believe, by far our best shot to get this contract stopped. If we mess this up, then that's it. So, everybody, please act professionally and responsibly.
Likes: PennyIA and Nielk
justinreilly, post 16: "I don't think this has anything specific to do with the IoM reports, just they are both attempts by people to make ME and other organic diseases disappear into amorphous mental illnesses so insurers don't have to pay for care."
I thought the GWI reports depended heavily upon the Wess school, and if the Wess school was also behind the DSM issue - and I see their influence in Scandinavia as well. It seems like it's the same core people who are doing this in each country. They're all in league. They write chapters in each others' books, lecture to each others' students, and go to the same conferences. And once they get a policy foothold in one country, they use that to argue for that same policy in another country. The same patterns seem to keep playing out / unfolding in each country. I suspect they have a very clear plan and path.
Re the subject of research, I can help minimally with some research. At a furture date, I might be able to do more. I guess at this time my gut instinct is to listen to the lawyers and perhaps let them give direction regarding which issues are most pressing. I don't have the experience/knowledge to "see" this myself for this situation. I know there's limited time and energy, so I'll follow their lead as to how and where to pack the best punch, so to speak.
justinreilly
NYC (& RI)
NotAllInMyHead said:
i had to strike a balance between giving the OIG enough information to investigate without bogging them down with too much information. Remember that the inspector general is is a neutral party here. he's not our enemy and we want to keep it that way. if, all of a sudden, he gets a ton of similar complaints. he will most likely be put off and that will definitely work against us.
Also, remember that the inspector general is unfamiliar with the symptoms and other specifics of our disease. if we give him too much to sift through, too many details, it may work against us because the main argument will get lost. sometimes, less is better. this is often hard to understand for lay people. but there are tactics involved here. and i did think it through.
The OIG has more than enough info to dig into this. I believe it would be a mistake to bombard them with more. there is no upside to going with more than the recent report, unless the other reports have significantly different, helpful statements by the IOM. in fact, going with older reports sets up an argument by the IOM that they have evolved as science has advanced. the report from earlier this year is by far our strongest argument.
I have some difference of opinion here. If indeed, as eco says, every one of the nine GWI report volumes says substantially the same nonsense about ME, we could simply point out that fact. It would not be overwhelming to the IG AND it would demonstrate a pattern of behavior by IoM especially if there were some good variance in the people who were on the various panels and/or there was some overlap between these panels and the one they will announce for ME.
It would not be overwhelming to the IG because we would merely state that every report said substantially the same thing on ME, not go into any more detail. Page cites/links to this material would be made in a footnote only.
If we can truthfully state that every report said the same thing on ME, especially if the various panels were composed of different people, then this shows a habitual pattern of activity by the IoM as an entity that will almost certainly be repeated in the ME report. If we only refer to one report, they could state that that was one isolated report and that each report is independent and isolated and solely created by the panel members for that specific report with no influence from either IoM as an entity or from the government. Since the panel members will differ, at least to some degree, from those on the last GWI report, this retort by IoM would probably seem plausible to many including perhaps the IG.
Additionally, if we looked at all nine reports, we would have nine different panels to compare to the ME report panel. If the panel picked for the ME report had substantial overlap with one or more of the GWI panels, we could note this fact and that the same people are likely to reach the same conclusion.
Lastly, you say that IoM could say the science has changed and they've evolved with the science, so we have to go with the last report. I agree, we have to go with the last report, Im not saying take it out, Im saying add the other 8 reports. If all nine say the same thing, they can hardly say they've evolved with the science.
Likes: Ecoclimber and Ren
Nielk said:
HHH/IIMgate
Where are the links to them?
They should all be listed here in these results for a search I did for 'gulf war' on the National Academies Press website:
http://search.nap.edu/napsearch.php?term=gulf+war
Likes: leela, Nielk and Ren
Ecoclimber
justinreilly said:
It establishes a bias precedent throughout their reports when viewing the other nine or so reports. CFS statement in report nine is similar to the their statement in Report one in 2001, which I included in a post about a month ago even uploading the Report one. I uploaded several more Reports. But don't just look at CFS but their health policy directive of moving medicine from symptom based criteria to evidence based criteria and what this means to patient's health care. Look at thier policy concerning other diseases and illnesses such as infectious diseases as well. There is also the financial ties to outside organizations which I posted awhile back. There is more under the surface that still needs to be research.
Likes: justinreilly
I will take on this project I suggested of checking the ME sections of each report. I have read three and they're basically the same. "not an organic disease", 'no physical findings', 'somatization', copious Wessely cites etc.
Likes: Roy S and leela
Can someone confirm, please, which reports are "the" reports we want to address? So everyone is on the same page. Thank you!
From justinreilly post 24, The National Acadamies Press link: http://search.nap.edu/napsearch.php?term=gulf war.
Gulf War and Health:-Treatment for Chronic Multisymptom Illness (2013)
Gulf War and Health:-Volume 8: Update of Health Effects of Serving in the Gulf War (2010)
Gulf War and Health:-Volume 7: Long-Term Consequences of Traumatic Brain Injury (2008)
Gulf War and Health:-Updated Literature Review of Depleted Uranium (2008)
Gulf War and Health:-Volume 6. Physiologic, Psychologic, and Psychosocial Effects of Deployment-Related Stress (2008) [Note date is listed as 2007 on va.gov website below]
Gulf War and Health:-Volume 5. Infectious Diseases (2007)
Gulf War and Health:-Volume 4. Health Effects of Serving in the Gulf War (2006)
Gulf War and Health:-Volume 3. Fuels, Combustion Products, and Propellants (2005)
Gulf War and Health:-Updated Literature Review of Sarin (2004)
Gulf War and Health:-Volume 2. Insecticides and Solvents (2003)
Gulf War Veterans:-Treating Symptoms and Syndromes (2001)
Gulf War and Health:-Volume 1. Depleted Uranium, Pyridostigmine Bromide, Sarin, and Vaccines (2000)
Gulf War Veterans:-Measuring Health (1999)
And the following from http://www.publichealth.va.gov/exposures/gulfwar/reports/instituteofmedicine.asp
Information regarding healthcare/disability coverage is also briefly mentioned on this page, but I didn't understand everything - just fyi, should it be of interest to others.
The list though:
Past Gulf War and Health IOM reports
Volume 9: Treatment of Chronic Multisymptom Illness (2013)
Volume 8: Health Effects of Serving in the Gulf War (2010)
Volume 7: Long-term Consequences of Traumatic Brain Injury (2008)
Gulf War and Health: Updated Literature Review of Depleted Uranium (2008)
Volume 6: Physiologic, Psychologic, and Psychosocial Effects of Deployment-Related Stress (2007)
Volume 5: Infectious Diseases (2007)
Volume 3: Fuels, Combustion Products, and Propellants (2005)
Updated Literature Review of Sarin (2004)
Volume 2: Insecticides and Solvents (2003)
Volume 1: Depleted Uranium, Sarin, Pyridostigmine Bromide, and Vaccines (2000)
Sofa, UK
Looking at some of the pages from the IOM report mentioned above, the problem that I see is that they seem to be describing current and past research and perspectives on 'CFS' - i.e. along the lines of "it has been categorised as a somatisation disorder"...such quotes don't read to me as them saying outright that CFS is a somatisation disorder, in their opinion, and thus everything they actually state, although selective, is factually true (as far as I can see). It's hard to mount a complaint against somebody's words when what they say is demonstrably factually true.
So I've only scanned the pages that have been cited here, but I haven't seen a 'smoking gun' yet in terms of demonstrating bias - or even demonstrating the panel's own view of CFS - and taking bits of quotes out of context (as often seems to happen) won't help get around this. I hope I'm wrong and I've missed something that could be useful in making the case you want to make, but it's important to read the whole sentence and get it in the right context, if the aim is to quote it as if it represents the panel's view and indicates the panel's bias.
Ok, let me try to explain again.
The additional information is unnecessary at this point, as the most recent report is this year and reflects the alleged bias. In a sense, I do not want to complicate the issue. Even if there were different committees involved in earlier reports (and I am sure there were), the issue is not whether a committee or members thereof were biased against "ME/CFS," but rather whether the IOM as an institution (!!!) is biased and this is reflected in a report issued this year. I'm guessing that a lot of discrediting of the statements made in the report is based on studies and research done since the original 2001 report.
The key point is that in a request for the OIG to investigate a conflict, we need a nice clean short statement of the issue. The 1992 letter demonstrates the simplicity of the request. A member made a statement in a deposition that reflected views on the issue under the contract (pertussis vaccine).
We can all debate the style of a legal request, but I brought the complaint and made the decision to have the targeted, clean approach and I still see that as the right one.
If the OIG were to respond that this was only an isolated incident, then maybe it might make sense to bring in the earlier stuff, but not now.
This isn't like a petition or letter writing campaign. It is a measured and professional attempt to get the OIG to takae a look at this issue of IOM bias.
I discovered the 1992 memo which was a great springboard to this request. If one member of a committee has a conflict due to prior statements on the issues under the contract, then it is clear that the IOM as an institution has a conflict if it, as an institution has stated a position on the contract issues. I could have tried to find some other, less parallel examples of conflicts and cited a bunch of other regulations, but decided it was best to have a simple and straightforward statement of the conflict.
We need to keep this clean for now if we want any chance of success with this. Adding additional information is just going to muddy the waters. It doesn't add anything in our favor. It just takes away from our conflict-of-interest argument. I am begging you to let reason be your guide here.
Again, this is the only shot that I see right now we have. I can only appeal to everybody's sense of responsibility for the community and the cause here. I cannot keep anybody from taking potentially harmful action. Everybody has to live with their conscience on this.
Likes: jspotila
i feel sick to my stomach because i just explained the legal strategy for the whole world, including the gov't, to see. giving away one's approach really weakens one's position. but i was basically forced to. it's very unfortunate.
Excellent work Jeannette
The IOM contract to redefine ME/CFS
Some emails have been sent to senior IOM staff and HHS staff explaining the conflict of interest, bias, contradictions in consistency and accuracy and the lack of independence of IOM in this matter.
Dear Kate Meck, (IOM)
thanks for your reply. That's excellent to see that my communication is in the public record. I would like to include further information for the public record.
The IOM has stated it's position on ME/CFS in the GWI report this year. I include evidence of this below:
http://books.nap.edu/openbook.php?record_id=13539&page=97
http://books.nap.edu/openbook.php?record_id=13539&page=100
The IOM itself is now conflicted and cannot under American law be part of any attempt to re-define ME/CFS. Any IOM involvement would mean conflict of interest, bias (in favour of NICE guidelines, CBT, GET, psychiatry, and IOM's approval of these), and lack of independence. Furthermore, there is additional bias, as IOM failed to consult the 5,000 research papers into ME/CFS detailing biological abnormalities, dysfunctions and infections in the formation of it's GWI report. IOM may become guilty of inconsistency and inaccuracy, as it's stated position on ME/CFS in the GWI report may differ from it's position in the ME/CFS report. From these scientific and legal facts, and stated position, the IOM cannot be fully trusted to form a panel, as there are questions relating to the IOM's conflict of interest, bias, consistency, accuracy and independence. The IOM's definition of ME/CFS (included above) in the GWI report this year, means the IOM will have to remove itself from the attempt to re-redefine ME/CFS. Thus the IOM cannot legally participate in its own study.
There are further aspects to this relating to balance and fairness, and to matters of 'Public Interest'. There is a memorial section on a web site to those people who have died of ME/CFS and it's health complications at http://www.ncf-net.org/memorial.htm . The seriousness of an illness can be gauged from the number of people who die of the illness and the many health complications it causes. This issue involves the death of innocent Americans and thus is a matter of vital 'Public Interest' and also of national security. One should contrast this level of seriousness with the insulting, degrading and mocking attitudes and views of the wessely school psychiatrists who are behind the failed NICE guidelines in Britain ; the same guidelines which IOM supported in its definition of ME/CFS in the GWI report and has now included in it's ME/CFS re-definition work. Here is one example of the mentality and motivations of those people who created the NICE guidelines and support psychiatric bias.
" In December of that year, the British Medical Journal continued its campaign of misinformation about ME/CFS in an article co-authored by Michael Sharpe ("What should we say to patients with symptoms unexplained by disease? The 'number needed to offend' ". Jon Stone, Alan Carson, Michael Sharpe et al. BMJ 2002:325:1449-1450). The authors calculated an 'offence score' of descriptions pertaining to patients who are deemed to have no disease; those descriptions included 'putting it on'; being 'mad', or 'imagining symptoms'. The authors noted that the term 'hysterical' was the only one on their list that specifically excluded malingering. The conclusion was that many of these labels did not pass the 'offence' test, so the best label was 'functional' disorders, as this label "provides a rationale for pharmacological, behavioural and psychological treatments aimed at restoring normal functioning".
The electronic responses to this article included one from Douglas Fraser, a professional violinist unable to work due to ME/CFS: ("The very fact that you are reduced to implementing yet another euphemism should alert readers to the reality that the concept hiding behind it is as ludicrous as it is offensive"); Tom Kindlon from the Irish ME Support Group: ("if the BMJ is going to publish papers like this, it should also publish information about how patients with many currently recognised diseases would have been told in the past that their symptoms were 'medically unexplained' or 'hysterical', (and) then some doctors might be more willing to say 'I don't know what is wrong with this patient' rather than to conclude 'this patient's symptoms are functional / hysterical / all in the mind' (or whatever euphemism is in fashion at the time"); "
Source: CORPORATE COLLUSION?, Hooper et al. (2007)
There are many, many examples of insults, abusive comments, lies, and deceptions by wessely school psychiatrists, the same people who drew up the ineffective NICE guidelines. No Federal body, and indeed no American government body should support such outrageous abuse of medicine and science, and abuse of seriously ill patients.
The IOM should by itself or in referral back to the Secretary of the HHS immediately call for the implementation of the Canadian Criteria 2003 in the USA as advised by the 50 leading ME/CFS medical doctors and researchers. And a retraction of its support for NICE guidelines in defining ME/CFS in it's GWI report. This would preserve the prestige, integrity and honor of the IOM and enable many Americans to get the diagnostics and treatments they need, and assist the research efforts of scientists in the USA and around the world.
David Egan.
Likes: Ren and Ecoclimber
i think trying to make the IOM see that its reputation is on the line is actually a very good strategy, david. they do feel somewhat omnipotent and untouchable. but their reputation is all they have. if they really get worried about that, and they might if we keep the heat on them, they may chicken out.
so, good work, david!
It was certainly not my intention to make anyone sick. I see no harm in collecting and analysing information for *possible* future use for an individual or group. I personally find it therapeutic and empowering to search for answers and contribute to understanding a larger picture. There's little else for some of us left in life, and it's hurtful to be berated for trying to contribute. Reason number two for isolation from humans.
Likes: justinreilly and Ecoclimber
Ren, I am sorry you felt berated. that was not my intention and i don't believe that is what i did. i wasn't replying to you, in fact. i am trying to save this effort. i figured that is in everybody's best interest.
i am also not saying it's a bad idea to collect information. in fact, that's a good idea b/c we may need it later.
anyway, i think i explained myself enough. everybody is free to do what they wish. good luck!
I know what you mean. I would edit your previous statement to obsfucate your current strategy. It's very difficult in this environment to engage in strategic manuvering without knowing who is doing what. Best to go with Plan A, yours, and if that doesn't produce results than pursue other strategic initiatives.
As a suggestion, perhaps it's best to have a planning group behind the scenes and accept all those who are currently engaged in stopping the IOM contract. This way no one would under mine the others actions and everyone would be on the same page.
I would not be surprise if the OIG is being innudated with complaints from ACA implementation fiasco.
Hermes said:
.............................
Excellent work, David. Did you cc anyone else on this in the IOM? HSS? Have you received a reply? Perhaps this is something that could be added later as evidence of bias in OIG complaint.
You could have PMd or emailed if you wanted to speak privately. I am going to email you to respond.
Ren said:
I was thinking of doing all nine of the numbered volumes- "Gulf War and Health", vols. 1-9. There are other IoM GWI reports, two of which you have listed above, and a number more from the late 1990s, but I thought it would be neater and cleaner to just do all the GW and Health vols. 1-9.
I am going to PM you the rest of my argument here.
Likes: Ren
The additional information is unnecessary at this point, as the most recent report is this year and reflects the alleged bias. In a sense, I do not want to complicate the issue. Even if there were different committees involved in earlier reports (and I am sure there were), the issue is not whether a committee or members thereof were biased against "ME/CFS," but rather whether the IOM as an institution (!!!) is biased and this is reflected in a report issued this year. I'm guessing that a lot of discrediting of the statements made in the report is based on studies and research done since the original 2001 report...
I fully appreciate that; in fact it was my point, even if you didn't realize it. I will email you on this.
I agree Ren. I think this information would also be useful in contexts outside a complaint to the HHS inspector general, such as in speaking to members of congress, the media and fellow advocates.
Likes: Roy S