IOM treatment recommendations for CFS

[Andrew]

IOM treatment recommendations for CFS

In 2013 the IOM published Gulf War and Health: Treatment for Chronic Multisymptom
Illness (ISBN 978-0-309-27802-7). You can either read it for free online, or you can download a free PDF. Go to this page: http://www.nap.edu/catalog.php?record_id=18253

In this treatment guide is a section about the treatment of chronic fatigue syndrome, presumably because a percentage of GWS patients also suffer from CFS. I previously commented on part of this treatment section. Now I will comment on more, by looking at their references one by one.

1, CDC (Centers for Disease Control and Prevention). 1994. Chronic Fatigue Syndrome: The 1994 Case Definition. http://www.cdc.gov/cfs/case-definition/1994.html (accessed November
13, 2012).

Many of you know this as the 1994 Criteria. In the IOM treatment guide they cite this to support IOM statements that GET and CBT are recommended treatments, and that there is no proof that pacing works. The 1994 criteria (and the page it is found on) says nothing about CBT, GET, or pacing, one way or the other.

2, CDC. Undated. Chronic Fatigue Syndrome: A Tool Kit for Providers. http://www.cdc.gov/cfs/
pdf/cfs-toolkit.pdf (accessed November 13, 2012).

This Tool Kit for Providers offers no citations or evidence to back up its claims.
It is also the same Tool Kit that the CFSAC recommended be completely removed from the CDC website (see the recommendation here: http://www.hhs.gov/advcomcfs/recommendations/06132012.html).

3. Cleare, A. J. 2003. The neuroendocrinology of chronic fatigue syndrome. Endocrine Reviews
24(2):236-252.

The IOM states this study shows improvement in CFS symptoms from exercise. It shows no such thing. The paper is an overview of research that covers the hypothalamic-pituitary-adrenal (HPA) axis in CFS patients. It also reviews other endocrine responses. Most of the studies summarized in this paper never mention exercise. The one study that does, draws no conclusion that CFS symptoms are improved.

4. Harber, V. J., and J. R. Sutton. 1984. Endorphins and exercise. Sports Medicine 1(2):154-171.
http://www.ncbi.nlm.nih.gov/pubmed/6091217 (accessed November 11, 2012).

The IOM uses this study to back up its claims that exercise helps symptoms in CFS patient. The study never mentions CFS patients.

5. Mayo Clinic Staff. 2011. Chronic Fatigue Syndrome: Treatments and Drugs. http://www.mayoclinic.
com/health/chronic-fatigue-syndrome/ds00395/dsection=treatments-and-drugs
(accessed November 11, 2012).

This page offers no citations or evidence to back up its claims.

6. Moldofsky, H. 1993. Fibromyalgia, sleep disorder and chronic fatigue syndrome. Ciba Foundation Symposia 173:262-279.

This document covers what its title says, and it includes many citations. To verify that this is evidence-based, I would have to download and read every study it cites that seems to cover the IOM claim. That is too much for me to take on right now. The IOM uses this study to support its statement that disturbance of restorative or deep sleep might play a part in triggering symptoms of CFS. At this time, I do not dispute or confirm that this is evidence-based.

7. National Collaborating Centre for Primary Care. 2007. Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis (or Encephalopathy): Diagnosis and Management of CFS/ME in
Adults and Children. London: National Institute for Health and Clinical Excellence.
http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf (accessed November 11,
2012).

This resource offers no citations or evidence to back up its claims.

8. In addition to the above resources, the IOM includes information that has no bibliographic references. I recognize much of this as statements made on the CDC website. It should be noted that the CDC website has been discredited (see page 16 of the PDF here: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf).

One of the reasons for hiring an independent research group is to circumvent entrenched institutional bias. Instead of circumventing it, the IOM rubber-stamped it by uncritically accepting statements on institutional web pages that offered no evidence. The IOM also referenced journal articles with evidence other than what the IOM claims. There is only one sentence in the entire CFS treatment section that possibly points to relevant evidence.

All of the problems mentioned above happened despite the IOM using a hand-selected panel whose work was reviewed by a separate review board, checked by review monitors, and approved by the IOM. In addition to evidence, the review panel is supposed determine if information is within the scope of the project. So if this section is seen something other than part of the evidence-based process, it should have been eliminated..

I testified at the CFSAC meeting about some of the above problems. Nancy Lee, MD, who is the designated federal officer assigned to this meeting, heard my testimony. In other words, the government has been informed. So any failure to pull out of this contract is done with knowledge that IOM has a history of grossly misrepresenting the state of the evidence with regard to CFS research.

 

[Esther12]

Thanks Andrew.

One of the reasons for hiring an independent research group is to circumvent entrenched institutional bias. Instead of circumventing it, the IOM rubber-stamped it by uncritically accepting statements on institutional web pages that offered no evidence. The IOM also referenced journal articles with evidence other than what the IOM claims. There is only one sentence in the entire CFS treatment section that possibly points to relevant evidence.

There are things about the idea of the IOM which could be good, but there are also a lot of reasons to think that it will be bad.

 

[taniaaust1]

Thanks Andrew you are doing some great work there...and even Im shocked to hear they used references in which didnt even match the things they said. Its just more proof of how there is being so much biased around this illness..people in high up places want ME/CFS buried. For them to use so many false references, obviously the IOM thing was a set up... set up with biased views in mind.

The same thing is at Wikipedia when I last checked. Lots of false quotes being made with references which dont match the quotes (I couldnt believe what I was seeing when I checked it out deeply one day..things which have managed to support how it really is.. the psych side has played down when someone goes to look into the real fact, by putting references up backing psych stuff which dont even relate to what was being said (just to push the psych stuff)... I guess most dont think to check the references of things which are being said which are true to see someone has added unrelated psych or GET or CBT references to them so that whoever reads the real fact, will then likely dismiss it when they look at the referance.

So this tactic of putting false references is being used all over the place in this other way too...not just to make it look like a (wrong) quote is being supported but also to destroy the reputation of true statements they havent managed to keep out of things by then purposlely putting up a non matching reference (which causes then people to doubt the true statement).

CFS article is so completely controlled that they just keep changing back if one tries to correct anything there and if others get involved trying to put it right...they close the ME/CFS article to changes as they cite an editing war is going on!!!. Its all rigged to biased views of a few people (or the same 1-2 people, i know one of them has more then one account)..

There really needs a group set up to go throu the wiki ME/CFS article and point out all the things in there which has wrong references attached etc. There IS a conspiratory out there towards ME/CFS. I resonated to some of the diagrams of tactics used in https://firstlook.org/theintercept/2014/02/24/jtrig-manipulation/?replytocom=5498#respond and I personally believe things like this from what Ive seen time and time again is being used in the ME/CFS field against us and due to this.. wikipedia is used as part of this.

This deception thing doesnt just go on in our illness but in others too eg Dr David Wakefield with the autism/vaccination stuff (another thing some in high places eg insurance and medical companies want buried). He got completely discredited by it falsely being put out that the ones in his study didnt even have Autism like he said they did .. he later went on to prove they did and were previously properly diagnosed but that was never publisicised about, not like the false accuations against him so that people think he was bad doctor who put out false info. The media is very much controlled and sometimes used to discredit people falsely and the truth often hidden.

Look what ends up happening to many of our specialists, some out there try to discredit them too and some have lost medical licences over this stuff eg look at what has been done to Dr Sarah Myhill and how much she's had to fight back...time and time again having to fight to get her medical licence back due to her willingness to stick up for us and be doing the right thing.

 

[Andrew]

I forgot to add something. If you see a flaw in what I said, please point it out. It will help find errors.

 

[taniaaust1]

Thanks Andrew.



There are things about the idea of the IOM which could be good, but there are also a lot of reasons to think that it will be bad.

Having IOM sort out our situation in light of what Andrew has pointed out they already have done as far as GWS and their responses around CFS in that, is like giving the school bully or a street gang the power to make the rules/laws to work out definitions and ideas and punishments on what a bully. assault or wrong doing is and what should happen to the perpretrators. Lets just give the criminals in jail the power to make the laws for us all and think yeah maybe they can do a good job and get things right as after all we do need laws and need them updated at times.

(sorry my post isnt directed at you but just is the way Im seeing it.. it makes no sense at all that after what they've already done, they should carry the power to be trusted in doing what they are now).

 

[Esther12]

I get you taniaaust1.

That patients have been relatively critical and engaged from the start will at least show them that we're ready for a fight if they try to make things harder to us. That could help lead to a better outcome this time.

 

[taniaaust1]

Is the GWS peoples still fighting what has been done to them by IOM? If so.. the false references Andrew has found in their stuff to do with us..this info should and needs to be passed on to whoever is fighting the IOM for them as they may not be aware of these reference inaccuracies in their report. This info may be quiite helpful in their legal battle or whatever.

Can anyone answer if there is a current legal fight or whatever going on there still?
(and if anyone knows who their top contact people are over it?).

 

[taniaaust1]

I get you taniaaust1.

That patients have been relatively critical and engaged from the start will at least show them that we're ready for a fight if they try to make things harder to us. That could help lead to a better outcome this time.

yeah if it happens it will be only cause they have been "forced too" as they know they are being too watched and likely to be pulled over the coals if too much stands out as not being right (that isnt to say thou that they may not have played a lot down, as much as they could in the process). Im not going to trust that their result was properly done due to the past (and the fact they rushed that contract throu in the sneaky manner they did etc which didnt allow other bidders for the contract).

 

[justinreilly]

Is the GWS peoples still fighting what has been done to them by IOM? If so.. the false references Andrew has found in their stuff to do with us..this info should and needs to be passed on to whoever is fighting the IOM for them as they may not be aware of these reference inaccuracies in their report. This info may be quiite helpful in their legal battle or whatever.

Can anyone answer if there is a current legal fight or whatever going on there still?
(and if anyone knows who their top contact people are over it?).

Tania,

I haven't heard of any legal fight. They got a hearing convened with some Members of Congress. Anthony Hardie seems to be their main person. He is on Facebook and 91outcomes.com.

Nice job, Andrew!

 

[Ren]

@Andrew - Thank you for doing and sharing this work! If we want to share this information elsewhere, should we credit "Andrew" and refer to this PR thread? And, will you submit this to the current IOM ME/CFS panel?

Additionally, does anyone know of a research ethics committee that this info could be reported to?

Sometime ago, leela found (I believe) and justinreilly posted a CSPI (Center for Science in the Public Interest report) -

http://forums.phoenixrising.me/inde...s-in-picking-panels-report.26600/#post-407265

- that was critical of the IOM. Perhaps, Andrew's info could be sent to them?

Also, occupycfs.com has hosted some guest writers of late - might that blog or even PR be willing to do a more formal piece on this info?

 

[Andrew]

@Andrew - Thank you for doing and sharing this work! If we want to share this information elsewhere, should we credit "Andrew" and refer to this PR thread? And, will you submit this to the current IOM ME/CFS panel?

If you link to this thread, then I can be alerted to any errors I made.

Sometime ago, leela found (I believe) and justinreilly posted a CSPI (Center for Science in the Public Interest report)

http://forums.phoenixrising.me/inde...s-in-picking-panels-report.26600/#post-407265

- that was critical of the IOM. Perhaps, Andrew's info could be sent to them?

What is that place?

BTW, I'm still trying to figure out who to send it to. Any suggestions are welcome, especially if they include the email address and say who it is.

 

[Ren]

I'm afraid that what I listed above regarding CSPI is all I know of them. Like others, I'm a bit more broken than usual at this time, but I'll try to keep this info in mind and think of ways it can best be used - my gut reaction would be to ask advocates with the most experience for their opinions. (I haven't read the entire thread here - so forgive any repeated info.)

If no one has yet done so, it would be good I imagine for several of us to double-check/verify everything - just for good practice/measure. I can help with this, but it may be as long as next week before I can begin, as I am quite slow right now and have some pressing responsibilities to first attend to.

 

[Andrew]

I think what I have to do is rewrite the some parts to make it generic, so I can send it to anyone. For example, I have to expand my abbreviations and adjust for people who don't understand the basics. Then, instead of finding a big mailing list to use, just sent it one at a time as I figure things out.

 

[Ren]

@Andrew - just as you consider who to possibly contact regarding the info you researched...

I noticed the following group sometime ago: http://veteransforcommonsense.org/about-vcs/. Paul Sullivan, who is listed as one of their board members, has appeared in some of the Gulf War Syndrome/Illness videos on youtube - sometimes with Anthony Hardie. I believe this organization though has assisted with various lawsuits, working on behalf of verterans.

Also and regarding the congressional hearings on Gulf War vets' care (or lack thereof), Rep. Mike Coffman (CO) was the chairman of the committee*: http://coffman.house.gov/

*Subcommittee on Oversight & Investigations Hearing on March 13, 2013. (Available on youtube.)

This site https://veterans.house.gov/hearing/gulf-war-what-kind-of-care-are-veterans-receiving-20-years-later lists Rep. Ann Kirkpatrick (AZ) as the Ranking Minority Member of the above committee. http://kirkpatrick.house.gov/

I also noticed that Dr. Beatrice Golomb is listed as having submitted testimony. http://cnl.salk.edu/~bgolomb/

Perhaps others can say more about her?? If I remember correctly, she advocates for Gulf War veterans, and sometime ago, I referenced a presentation she did from a few years ago where she talks about issues of conflict of interest within medicine and research.

Maybe some of these people - Sullivan, Coffman, Kirkpatrick, Golomb - would be interested or able to recommend who best to speak with? It seems that the Gulf War vets most often have eluded contact. So if you get a response, I think that would be great. But if you don't, I wouldn't think too much of it. Someone will care and will respond at some point.

 

[Andrew]

We cannot assume veterans groups are interested in working with us. We are generally seen as whack jobs who just need to get exercise and get over it. We are hardly a group that would add credibility to veterans. And I'm not saying this to rule out veterans. Only that I'm not surprised they are not calling back.

 

[Ren]

I agree, Andrew, and I don't have the source handy - but I did see/hear Anthony Hardie in one video mention something to the effect of - people with GWI often share symptoms with people with CFS or that many Gulf War veterans are diagnosed with CFS.

Anyway though, this stayed in my mind because Hardie made the statement in a matter of fact way that didn't indicate a prejudice against CFS, IMO. I took this as a positive sign.

At this time, I suspect that veterans are most focused on getting proper care for veterans, no matter the condition. I've considered then that instead of trying to attract veterens to our cause - we need to supply veterens with the information that best helps them to fight their fight with the VA. And/or we ourselves can take this fight to the VA and advocate for proper treatement for veterans with ME/CFS.

Any positive changes in policy will be a win for everyone, I believe.

 

[justinreilly]

Anthony Hardie did recently make a nice post on the Facebook group. He said he watched some of the IoM meeting videos and he made a few suggestions. So, some beginnings of contact which is good.

 

[Ren]

Just as an FYI, I noticed this page* for ordering multiple copies of the CDC Tool Kit pdf referenced in post 1. *http://wwwn.cdc.gov/pubs/CDCInfoOnDemand.aspx?ProgramID=27

And while no authors are listed in the pdf document, the page for ordering the tool kit is marked with the names "Dana Brimmer, Elizabeth Unger, James Jones, Roumiana Boneva."

I'm not familiar with all these players, but after a google search, it's my impression that Jones, at least, is overwhelming viewed as extremely biased and extremely harmful to the welfare of people with ME/CFS.

 

[Ren]

@Andrew - I'm still ever-so-slowly working through the info and sources to which I have access. I did want to ask though about the Mayo Clinic info because the "Treatments and Drugs" page* has a drop-down "References" section that I wasn't sure that you'd seen.

*http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/treatment/con-20022009


I've haven't looked at these references in detail, and you and others who are more familiar with various sources/research (real or psuedo) are likely to recognize red flags. I can (superficially) say that CDC is referenced several times (and of course the CDC references themselves may lack references. I haven't checked.) Also, PACE is included.

I haven't read all the Mayo info (that beyond the treatment section) on CFS - but I believe the symptoms section is misleading bc it says something like such-and-such eight symptoms are associated with CFS. Anyway, I thought it sounded like all eight symptoms were absolutes - while to my understanding, CFS/ME criteria usually says x number of such-and-such symptoms are required. Right?

----------------

Edit: Additionally - and perhaps already addressed - how is it in any way professional, academic, or ethical for IOM and its reviewers to use secondary sources, such as Mayo?

 

[Andrew]

Thanks, Ren. I didn't see those references on the Mayo site. I need to change my approach.

As for your point about secondary resources, you are right. This does not constituted review of the science. It is citing other people in the hopes they accurately reviewed the science. I happened to speak with a scientist I know about this, looking for a good quote I could us in my IOM piece. I never get good quotes from him because he is so technical. But he said he would expect secondary research from his freshman colleisge students, but not at a high level. Problem is, the average legislator or reporter won't understand why high level work should not consist of simply quoting secondary sources. So I'll need a clear way of explaining this.

And now I have to redo this whole thing. But better to redo it than have it fall flat on its face.

What bugs me is when I was healthy I would have caught all this right away.