• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

HHS/IOM contract

unto

Senior Member
Messages
172
thanks Italy for this fight that you do, in my country, unfortunately, in these days outputs are "guidelines" on ME / CFS, we had hoped that patients come close to those Canadians, on the other hand are always focused on the psychological; is also a big disappointment because the report was attended by medical experts / famous in the treatment of ME / CFS, some of which menbri patient groups.
ciao
 

Ren

.
Messages
385
@PennySwift - Fyi, my comment on the article cited above was posted, but has since been removed. I also tried twice to comment on your article on Karina Hansen, but both times my comment was refused. (I have a copy of at least one of the these comments - if/when I find a copy of the other, I'll repost them here.) Thank you again so much, for your interest in and help for this community. Best, R-

"DOWN WITH BIG BROTHER"
 
Last edited:

Ren

.
Messages
385
Subject: Liberty Voice - Boldly Inclusive

My comment was posted to this article (http://guardianlv.com/2014/02/cfs-patients-war-against-controversial-u-s-health-research-plan-video/), but it has since been removed.

I wrote:

"Despite continual attacks from insurers (both public and private), some psychiatric groups, and government officials influenced by such groups - Researchers have published over 4500 peer-reviewed papers which demonstrate the biological nature of ME.

With proper funding, biological research will help truly manage and/or cure this disease. Not only is proper funding of biological research long past due, however, it's time as well that the agencies, institutions, and medical personnel who choose to abuse individuals with ME be held professionally and legally accountable for their actions.

With the abundance of biological data and expert guides (CCC and ICC) freely available, the Nuremberg defense is no longer an acceptable excuse for the ongoing abuse and trauma inflicted upon this unique (patient) population.

Please remember, people do not just suffer for decades, they die as well - often from suicide as the disease itself coupled with societal hostility and/or isolation becomes unbearable.

Ms. Swift, THANK YOU so much for helping to share the voices of a community who is so often silenced. Your time and work are greatly appreciated!!"


As stated earlier, I also tried (on two different days) to post a comment on the recent Karina Hansen article, http://guardianlv.com/2014/02/briti...cue-me-patient-held-at-danish-hospital-video/.

Both times, my comment was not posted at all. I wrote:

"Danish psychiatrists Nils Baile Christensen and Per Fink are both cited in the Institute of Medicine's controversial 2013 report, "Gulf War and Health: Treatment for Chronic Multisymptom Illness" which also features CFS. (1)

The IOM CMI report also cites the UK psychiatrist responsible for the abuse of young ME patient Ean Proctor, whom medical staff threw into a pool, flung from his wheelchair, and left lying in urine-soaked bedding. (2)

What are the ethical implications of an IOM panel who chose to include work from individuals who build careers on such abuse?

(1) http://www.nap.edu/openbook.php?record_id=13539&page=150

(2) http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

Thank you Ms. Swift, Liberty Voice, and Mr. Wijbenga for helping to share word of these horrific wrongs. Bless Dr. Speight for all of his work and the Hansen family (and others) for all they endure.

As for the medical-and-social service professionals who abuse their positions of power - they've earned a place among those who once dictated and enforced social policies like eugenics, forced sterilization, lobotomies, criminalization of homosexuality, and institutionalization for political dissent. Same abusers, same abuse, new victims."
 
Last edited:

Izola

Senior Member
Messages
495
Subject: Liberty Voice - Boldly Inclusive

My comment was posted to this article (http://guardianlv.com/2014/02/cfs-patients-war-against-controversial-u-s-health-research-plan-video/), but it has since been removed.

I wrote:

"Despite continual attacks from insurers (both public and private), some psychiatric groups, and government officials influenced by such groups - Researchers have published over 4500 peer-reviewed papers which demonstrate the biological nature of ME.

With proper funding, biological research will help truly manage and/or cure this disease. Not only is proper funding of biological research long past due, however, it's time as well that the agencies, institutions, and medical personnel who choose to abuse individuals with ME be held professionally and legally accountable for their actions. . . ."

End Quote

************************************************
Thank You Ren.
 
Last edited:

Izola

Senior Member
Messages
495

Izola

Senior Member
Messages
495
Subject: Liberty Voice - Boldly Inclusive

My comment was posted to this article (http://guardianlv.com/2014/02/cfs-patients-war-against-controversial-u-s-health-research-plan-video/), but it has since been removed.

I wrote:

"Despite continual attacks from insurers (both public and private), some psychiatric groups, and government officials influenced by such groups - Researchers have published over 4500 peer-reviewed papers which demonstrate the biological nature of ME.

With proper funding, biological research will help truly manage and/or cure this disease. Not only is proper funding of biological research long past due, however, it's time as well that the agencies, institutions, and medical personnel who choose to abuse individuals with ME be held professionally and legally accountable for their actions.

With the abundance of biological data and expert guides (CCC and ICC) freely available, the Nuremberg defense is no longer an acceptable excuse for the ongoing abuse and trauma inflicted upon this unique (patient) population.

Please remember, people do not just suffer for decades, they die as well - often from suicide as the disease itself coupled with societal hostility and/or isolation becomes unbearable.

Ms. Swift, THANK YOU so much for helping to share the voices of a community who is so often silenced. Your time and work are greatly appreciated!!"


As stated earlier, I also tried (on two different days) to post a comment on the recent Karina Hansen article, http://guardianlv.com/2014/02/briti...cue-me-patient-held-at-danish-hospital-video/.

Both times, my comment was not posted at all. I wrote:

"Danish psychiatrists Nils Baile Christensen and Per Fink are both cited in the Institute of Medicine's controversial 2013 report, "Gulf War and Health: Treatment for Chronic Multisymptom Illness" which also features CFS. (1)

The IOM CMI report also cites the UK psychiatrist responsible for the abuse of young ME patient Ean Proctor, whom medical staff threw into a pool, flung from his wheelchair, and left lying in urine-soaked bedding. (2)

What are the ethical implications of an IOM panel who chose to include work from individuals who build careers on such abuse?

(1) http://www.nap.edu/openbook.php?record_id=13539&page=150

(2) http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

Thank you Ms. Swift, Liberty Voice, and Mr. Wijbenga for helping to share word of these horrific wrongs. Bless Dr. Speight for all of his work and the Hansen family (and others) for all they endure.

As for the medical-and-social service professionals who abuse their positions of power - they've earned a place among those who once dictated and enforced social policies like eugenics, forced sterilization, lobotomies, criminalization of homosexuality, and institutionalization for political dissent. Same abusers, same abuse, new victims."
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@Ren, it is indeed the same old abuse. Psychiatry has a long track record of it. When you go back in the history of psychiatry, its a history of horror. Vampires, werewolves, witches, ghosts, goblins ... eat your heart out. Nothing is scarier than psychiatry except psychotic mass murderers with an army behind them.

Since at the May 2013 IiME conference there was a call to have doctors who prescribe exercise for ME to be struck off the medical register, I think its time we think along those lines. I have been thinking that way even before Don Staines made his statement (to audience wide approval).

I do know if I face serious psychobabble at any point I will be lodging a formal complaint.
 

Ren

.
Messages
385
Since at the May 2013 IiME conference there was a call to have doctors who prescribe exercise for ME to be struck off the medical register, I think its time we think along those lines. I have been thinking that way even before Don Staines made his statement (to audience wide approval).

I wasn't aware of this, but this is very good to know. Thank you for sharing.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@Ren Can I ask how you have been able to determine "Researchers have published over 4500 peer-reviewed papers which demonstrate the biological nature of ME." Thanks.
 

Ren

.
Messages
385
@Firestormm , I haven't re-read/viewed the following sources in some time - but I noted the "4,500 plus" reference from a 2011 interview with Dr. Vernon:

"Post: Is CFS a "real" disease? - Vernon: There are more than 4,500 papers in the medical literature that describe disturbed or altered biology in people with CFS, so, yes, the disease is very real."

http://www.saturdayeveningpost.com/2011/10/24/health-and-family/medical-mailbox/cfs.html



And also from the following 2012 CDC physician-education webinar (web seminar), Chronic Fatigue Syndrome: The Challenges in Primary Care.


Within the section, "The Biology of CFS", Dr. Komaroff states,

"Thousands of published studies now have found that there are abnormalities of the brain and autonomic nervous system; chronic activation of the immune system; that there is a genetic component; that oxidative stress and nitrosative stress and abnormalities in energy metabolism are seen." (19.06)

http://www.medscape.org/viewarticle/759095




And from Hooper's Magical Medicine: "...despite approximately 5,000 published mainstream papers that prove them wrong about the nature of ME/CFS, the Wessely School remains obdurate that "CFS/ME" is a somatisation disorder. " (p.48)

And "Dr Suzanne Vernon... stated on 5th December 2008 that there are now more than 5,000 peer-reviewed articles in the biomedical literature that tell us a lot about the disrupted biology of ME/ CFS, about what happens to the immune and endocrine systems and to the autonomic and central nervous systems. " (p.72)

"As stated by Dr Suzanne Vernon (see Section 1 above), there are now over 5,000 worldwide peer-reviewed scientific papers (and numerous textbooks) showing that ME/CFS is a complex multi-system disorder involving demonstrable pathology not only of the central and autonomic nervous systems but also of the immune, cardiovascular and endocrine systems, and that on‐going inflammation is a significant feature, with damage to skeletal and cardiac muscle as well as to other end organs including the pancreas and liver." (p.98)


The 5,000 number is repeated two additional times as well in Hooper's text (p.269 and p.297). But I can't find what Hooper's reference is for this number - besides attributing it to Vernon.

There is the following 2008 ProHealth interview with Vernon:

"Dr. Vernon:There are more than 5,000 peer reviewed articles in the biomedical literature that tell us a lot about the epidemiology and the biology of CFS...

By studying individuals and populations, we’ve learned a lot about the biology of CFS, including what can trigger CFS (e.g., infection) and what happens to the immune and endocrine systems, the autonomic nervous system, and the central nervous system. Not all of these systems are perturbed in a person with CFS and this has helped us realize how heterogeneous CFS really is."

http://www.prohealth.com/library/showarticle.cfm?libid=14167


I don't know why Vernon's number decreased over the years, so I went with the more conservative "4,500 plus" - but obviously I didn't stay as generic as Komaroff by simply saying "thousands".

Do any of our advocates have conact with Vernon? It might be good to hear how she (or even Komaroff) determined their numbers. Does anyone have an opinion about citing this number when we're trying to comment on / communicate the status of ME/CFS? Thanks!
 
Last edited:

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Ms. Swift,

Thanks for listening to us and looking into these issues and reporting on them more in depth and more accurately. You are helping Millions of disabled people!

I don't mean to find fault, but I have to correct one inaccuracy in your article on the Justina Pelletier. I want to clarify that some medical sources do claim that CFS, ME and Fibromyalgia are 'medically unexplained', however this is inaccurate. The etiological cause (such as a virus or toxin) has not been agreed upon for these diseases, but much of the pathophysiology is known and accepted by mainstream medicine, just as in many other diseases which are not considered "medically unexplained" such as Multiple Sclerosis and Alzheimer's.

You also take it one step in the wrong direction by claiming the diseases "cannot be medically explained" which is even more inaccurate. These inaccuracies lead to just the sort of severe iatrogenic (physician-caused) morbidity (illness) that you are reporting on in this article.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I posted a couple of comments on the first article that never 'stuck' or made it through moderation, despite asking them three more times to post it, with the text attached in one. I also posted an encouraging comment on your second article, but it didn't appear. Others, such as Ren, above, have said they had the same problem.

fwiw, here is one of the comments to your first article:

Dear Ms. Swift,

You have delved more deeply into the topic of ME than many very experienced journalists and gotten some things right here that they have not. Thank you and congratulations on that. This is a quite challenging topic to understand and on which to report.

That said, there are inaccuracies in this piece, some of which have been pointed out by others. More to the point is that you have presented only one side of the story- the intentionally inaccurate one; 'intentional' not on your part, but on the part of the CFIDS Association of America (CAA), Health and Human Services (HHS) and it's public health agencies (CDC and NIH). CAA and HHS have a decades-long history of intentionally warping ME science and harming patients. Please see the wonderful, very accurate articles of Prof. David Tuller, DrPH on the Institute of Medicine (IoM) contract and on the history of CDC vis a vis ME, links below.

Sorry if I seem bossy, but these are required reading for anyone reporting on this story. N.B. that his article of January 27 has nearly 10,000 Facebook likes and 1,200 tweets. It has practically 'gone viral' not because it has a flashy headline or is on a cool or trendy subject, but simply because it presents accurate facts on the present incarnation of abuse of ME patients by HHS.

HHS has responded to the President's request to increase the priority of ME by instead increasing its activity to warp the science. It chose IoM for a specific reason: IoM has a long history of publishing egregiously inaccurate misinformation about both ME and GWI (which is either a subset of ME or a nearly identical disease) and I would be shocked if they don’t do it again.

Please do not be discouraged by the 'constructive criticism' I and others give you. I urge you to pull this article, to investigate more deeply and correct the errors and include the information which patients provide to you. There are hundreds, if not thousands of ME patients who know more than anyone else in the world except for a few dozen clinicians and researchers. We really are your best resource.

You have a great opportunity to do the work that journalists hunger for- to report on a vastly underreported and extremely important story. If you pursue this story like pioneering journalists such as Prof. Tuller, Hillary Johnson, Llewellyn King and Mindy Kitei, you can tremendously help the 1 million Americans victimized by CDC, NIH, CAA and this terrible disease. If your articles are as accurate as Prof. Tuller's don't be surprised if they breakout and go viral!

I would be more than pleased to discuss this further with you. I am at your service. Thank you for your consideration.

Prof. Tuller's articles:
http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

Sincerely,
Justin Reilly, esq.
New York, NY
 
Last edited: