HHS already spruiking the benefits of CBT and GET

[jimells]

He speaks of these 2 members as if they were learning disabled. And what does it say if this is the caliber of member for these panels?

It says they are political appointees carrying out the mandate of their patrons, in other words, "business as usual" at Versailles on the Potomac.

 

[akrasia]

@akrasia said: index.php?goto/post&id=551566
When Lipkin was denied his, he was able to establish why it happened and get the 2 members booted off the SEP.
　
Pardon my brain fog, but where does it say Lipkin got two members booted off the SEP?

http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html

Kitei: You mentioned someone on the study section said this was a psychosomatic illness. Can’t this person be educated?



Lipkin: I think this person has to be eliminated. I pushed to have him eliminated permanently from this study section. I’m not going to tell you his name because it’s not appropriate, and I’m not supposed to know it….

I think I made a reasonable inference from Lipkin's statement at least as it pertains to the member who held the psychosomatic view. While he did not explicitly say that he was replaced, to my eyes, anyway, this is a very angry statement. "Eliminate" carries powerful connotations. If he pushed to have him gone I suspect he's gone. The other member, if not suffering the same fate, was probably "reeducated." I still have a memory of both of these guys being dismissed but that might have been a bit of wishful thinking and I don't have the time to research it at the moment.

As evidence of Lipkin's influence I recommend a visit to Jennie Spotila's blog:

http://www.occupycfs.com/2014/11/10/p2p-and-dr-francis-collins/

Apart from the dismaying/hilarious disarray of the P2P process, the insistence on the centrality of research into the microbiome bears witness to Collins relationship to Lipkin.

It just reminds you how you shouldn't attribute competence to people in government or professionals.

A member of this forum often invoked this quote from Napoleon:

"Never ascribe to malice that which is adequately explained by incompetence."

 

[Nielk]

A member of this forum often invoked this quote from Napoleon:

"Never ascribe to malice that which is adequately explained by incompetence."

Incompetence cannot be explained when it is mainly reserved to a specific group. When "incompetence" is repeatedly and continuously directed to a particular segment of population, one can assume that there is "malice" intentions.

 

[Sidereal]

I don't know about incompetence. I'm not saying the government is competent but you do have to wonder about the reasons for this extraordinary effort to stifle any biological research into "neuroimmune" diseases like ME/CFS, FM, GWI, autism etc. Why is this? Large amounts of funding are handed out for research into biological causes of psych conditions like major depression so it can't be that there is no funding for CFS because it's deemed to be psychological.

 

[Nielk]

I don't know about incompetence. I'm not saying the government is competent but you do have to wonder about the reasons for this extraordinary effort to stifle any biological research into "neuroimmune" diseases like ME/CFS, FM, GWI, autism etc. Why is this? Large amounts of funding are handed out for research into biological causes of psych conditions like major depression so it can't be that there is no funding for CFS because it's deemed to be psychological.

ME/CFS is one of the few chronic diseases that render patients severely disabled for decades. This is a serious liability for insurance companies. It would be much better for them if we had a disease that quickly deteriorated and would lead to a quick death. More than 50% of us are unable to work which is a drain on on government subsidies. If they can claim that this is an imaginary syndrome that can be alleviated by activity and some counseling, they are off the hook.

 

[akrasia]

Incompetence cannot be explained when it is mainly reserved to a specific group. When "incompetence" is repeatedly and continuously directed to a particular segment of population, one can assume that there is "malice" intentions.

Where you see malice, I see indifference, arrogance and blindness, mental sloth and embedding in received ideas, features of bureaucracies everywhere. They genuinely believe they are right. They, of course, don't realize they are incompetent.

These reflexes are baked into the system and inertia is a characteristic of policy, once adopted, across government.

I think we are so attuned to the injustice of what happened to us that it has obscured the systemic nature of the abuse.

Suppose for a moment that "they" take ALS "seriously." In what kind of rational, compassionate social welfare system do people have to drench themselves in ice buckets to raise money for a crippling, fatal disease?

For decades the HHS have been poorly improvising their m.e. policy. And that's what's it's been, an ad hoc performance sometimes informed by psychiatry sometimes by actual decent research like the grant given to the Hospital for Tropical Medicine in London for a biobank. The one constant is that it has always been grossly underfunded.

Things are a bit more complicated in the UK because of the influence of the BPS and the insularity of the context. But what's interesting to me is that Wessely, White and co. who at one time were active participants in formulating HHS positions on m.e. are no longer part of the conversation. And as @Iquitos noted Jared Younger has spoken of the SEP his grant went through as being comprised of people who knew the subject.

Where we agree, is that there's been no leadership, pathetic funding, and poor thinking. But where you see intention I see indifference.

 

[Nielk]

One can argue that there is a degree of incompetence in all government agencies and certainly at the HHS. Ideally, there should be a lot more funding for all serious diseases because what else is as important to a country than the health of it's citizens?

It is when one disease is set apart from the others in the negligence, marginalization and continued denial of funding compared to the others, that one should be thinking why is this happening?

Why is incompetence so much more apparent in this specific disease? Why are other diseases with similar impact funded ten times more?

It does not make mathematical sense that one diseases is consistently neglected just by chance.

 

[akrasia]

ME/CFS is one of the few chronic diseases that render patients severely disabled for decades. This is a serious liability for insurance companies. It would be much better for them if we had a disease that quickly deteriorated and would lead to a quick death. More than 50% of us are unable to work which is a drain on on government subsidies. If they can claim that this is an imaginary syndrome that can be alleviated by activity and some counseling, they are off the hook.

I had a look at WHO for information on chronic diseases. There are many that cause long term, decades long, disability including ms, vision impairments, heart disease, stroke, cancer, chronic respiratory diseases, diabetes, and obesity.

I think the insurance companies had their part to play at the time of Holmes and Fukuda and the CDC complied because they genuinely did not believe in the seriousness of the disease, even though by then social security was already granting disability to people based on a cfs diagnosis. Why social security acknowledged the disabling nature and private insurers were allowed to refuse is something that needs more research. I have no love for insurance agencies.

I don't think the trajectory you are describing is going to happen. I see no indications that SSA is about to revise its policies.

One can argue that there is a degree of incompetence in all government agencies and certainly at the HHS. Ideally, there should be a lot more funding for all serious diseases because what else is as important to a country than the health of it's citizens?

It is when one disease is set apart from the others in the negligence, marginalization and continued denial of funding compared to the others, that one should be thinking why is this happening?

Why is incompetence so much more apparent in this specific disease? Why are other diseases with similar impact funded ten times more?

It does not make mathematical sense that one diseases is consistently neglected just by chance.

Why not just maintain the status quo? Things were nicely festering at the OWHR.

Why did the P2P cause such confusion and consternation for the very people charged with handling it, if they had settled upon a final strategy of denial of M.E.?

The fact that M.E. is in the problematic category of contested knowledge, like chronic Lyme, Fibromyalgia, Gulf War, makes it a magnet for neglect. It could be worse, imagine what it's like to have what they are calling Morgellon's.

I have lived with m.e. for almost 30 years and have given it a great deal of thought. I don't dispute that the HHS saw this illness as psychiatric. In fact circa 1999 I helped to draft a petition with Condy Eckerle,with major assistance from Pat Fero, that garnered between 4000 and 5000 signatures to demand a GAO investigation of the NIH's budget, which like most things, particularly at that time, led nowhere. But I see the psychiatric view of m.e., which is undergirded by no solid evidence, a null set, as an ongoing stupidity not conspiracy. I don't think that they recognize the seriousness of the disease and are suppressing it. They just don't see. And given that they,the HHS, are charged with being the custodians of the nation's health, they don't have the luxury of deferral and neglect. They simply were not equal to the challenge posed by m.e.

The conditions in which the disease has taken place is the social equivalent of the perfect storm: a skeptical medical establishment, whose views are mediated by all kinds of prejudice, a cowardly incurious press, and a disbelieving public.

And once these conditions were set in motion, they could make the argument that no one was interested. I'll let Ron Davis have the last word,

Dr Davis told Medscape Medical News, "NIH funds researchers...There are very few [ME/CFS] researchers, so NIH's budget is proportional to that. Of course, the number of researchers is proportional to the NIH funding. So it's a catch-22."

 

[Iquitos]

"The conditions in which the disease has taken place is the social equivalent of the perfect storm: a skeptical medical establishment, whose views are mediated by all kinds of prejudice, a cowardly incurious press, and a disbelieving public." - akrasia

Nonsense! That would be a rewrite of history. If there is/was a "perfect storm", it was created by the CDC, surely with the encouragement and complicity of the NIH. Dr. Peterson gave the CDC every reason to take this disease seriously when he sent them the brain scans that showed lesions similar to those found in MS, AIDS patients and in Alzheimer's Disease back in the '80s.

The CDC spent $5 million on a "rebranding" campaign to misinform/disinform the medical industry, the public, researchers, patients and their families.

The "skeptical medical establishment" did not happen in a vacuum. It was an attitude bought and paid for by the CDC. Through the decades they have been able to find the money for other misinformation campaigns or just running in place to appear like they are doing something. (The recent IOM and P2P expenditures are only the latest in misspent money that could have gone toward finding causes and treatment, money spent at the same time researchers are being denied the money to extend the knowledge that this is, indeed, a physical ailment.)

The "cowardly incurious press" just did what media whores always do: try to sell papers/stories with sensationalism, without due diligence. On the other hand, in 1994 Primetime Live with Dr. Nancy Snyderman and Sam Donalson did a special on CFS whereby they treated patients with respect. In it Dr. Philip Lee of NIH says CFS is probably a virus or a retrovirus. 1994!

As for "a disbelieving public", I have encountered people in the medical industry from the very beginning of the outbreaks in the 1980s who were not fooled by the CDC's disinformation campaign. After being assigned to a talk therapist for my "depression" (a condition I have never had), it was ironic that the psychiatrist had "CFS" and volunteered to me that he thought it was being covered up by the US governmental health bureaucracy. That was what we talked about many times in my "therapy." Possible theories on WHY, the biggest unsolved mystery in this equation. Again, ironically, this psychiatrist had to quit work altogether because of the hip joint pain that made him unable to even sit in a wheelchair long enough to think straight. I remember him lurching down the hall, away from me after a session, with the kind of pain and lurching that I now have with similar hip joint pain.

In hospital for a fall in which I broke my leg and dislocated my shoulder, the doctor was disdainful but after he left, the nurse whispered to me that she believed I had "CFS" because her sister had it and was being treated just as disdainfully as I was.

 

[MeSci]

The CDC spent $5 million on a "rebranding" campaign to misinform/disinform the medical industry, the public, researchers, patients and their families.

The "skeptical medical establishment" did not happen in a vacuum. It was an attitude bought and paid for by the CDC. Through the decades they have been able to find the money for other misinformation campaigns or just running in place to appear like they are doing something. (The recent IOM and P2P expenditures are only the latest in misspent money that could have gone toward finding causes and treatment, money spent at the same time researchers are being denied the money to extend the knowledge that this is, indeed, a physical ailment.)

The "cowardly incurious press" just did what media whores always do: try to sell papers/stories with sensationalism, without due diligence. On the other hand, in 1994 Primetime Live with Dr. Nancy Snyderman and Sam Donalson did a special on CFS whereby they treated patients with respect. In it Dr. Philip Lee of NIH says CFS is probably a virus or a retrovirus. 1994!

As for "a disbelieving public", I have encountered people in the medical industry from the very beginning of the outbreaks in the 1980s who were not fooled by the CDC's disinformation campaign. After being assigned to a talk therapist for my "depression" (a condition I have never had), it was ironic that the psychiatrist had "CFS" and volunteered to me that he thought it was being covered up by the US governmental health bureaucracy. That was what we talked about many times in my "therapy." Possible theories on WHY, the biggest unsolved mystery in this equation. Again, ironically, this psychiatrist had to quit work altogether because of the hip joint pain that made him unable to even sit in a wheelchair long enough to think straight. I remember him lurching down the hall, away from me after a session, with the kind of pain and lurching that I now have with similar hip joint pain.

In hospital for a fall in which I broke my leg and dislocated my shoulder, the doctor was disdainful but after he left, the nurse whispered to me that she believed I had "CFS" because her sister had it and was being treated just as disdainfully as I was.

Here is another variation on the history of ME, with details about the UK involvement.

 

[taniaaust1]

"


If it's not been mentioned elsewhere (and in addition to the above) --

The NIH "Medline Plus - Trusted Health Information for You" CFS page was updated 15 January 2015 with a reference/link to the "Therapists must end patients' fear..." article. (See also archive.org.)

Said reference/link above links to another Medline Plus page (also 15 January 2015) featuring the full "fear" article. So, this is at least a second US .gov site to feature this article. (The first being healthfinder.gov.) Are there others?

http://www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html
http://www.nlm.nih.gov/medlineplus/news/fullstory_150420.html

EDIT: See also NIH.gov PubMed Health (14 January 2015). A third "fear" reference...
http://www.ncbi.nlm.nih.gov/pubmedh...-therapy-and-exercise-may-help-some-with-cfs/


.

The way Im seeing it is that there is a plot going on to align the whole world to the same kind of strong thinking that this illness is a psychological one (possibly a big world wide insurance company is behind this? (Many very important people own multi companies, mega corporations, there is a person or persons behind all this!!).

First it was England, next it will be America as what happens when America is strong in that psych stance? It will became the more normal thing all over the world as most other countries do pay attention to Americans CDC and their advice on illnesses. Ive had GPs here in Australia go to the Amercia CDC site to look up CFS info.

Expect to see referances for this fear study or something to do with this.. go up at the CDC website. Its like a game of chess and we are badly loosing, we dont have many pieces on the board.

 

[Iquitos]

Here is another variation on the history of ME, with details about the UK involvement.

From the link above:

"The incidence of ME / ICD-CFS is known to be rising: in April 1994, the insurance company UNUM (one of the largest disability insurers) reported that in the five years from 1989 - 1993, mens' disability claims for CFS increased 360%, whilst womens' claims for CFS increased 557%. No other disease category surpassed these rates of increase. In order of insurance costs, ME/ICD-CFS came second in the list of the five most expensive chronic conditions, being three places above AIDS. At the Fifth American Association of Chronic Fatigue Syndrome International Research and Clinical Conference held in January 2001 in Seattle, the Associate Director of the University of Washington's CFS Research Centre (Dr N Afari) confirmed that the incidence is indeed rising."

UNUM and Wessely have been committing crimes against humanity for at least 20 years.

In order of insurance costs, ME/ICD-CFS came second in the list of the five most expensive chronic conditions, being three places above AIDS.

And in those 20 years, billions have been spent on AIDS research.

 

[MeSci]

In order of insurance costs, ME/ICD-CFS came second in the list of the five most expensive chronic conditions, being three places above AIDS.

I would guess that the main reason they are expensive is that people don't get proper treatment, so they stay ill.

 

[Roy S]

Thanks for finding that, @taniaaust1
　
the US NIH story:
　
http://www.ncbi.nlm.nih.gov/pubmedh...-therapy-and-exercise-may-help-some-with-cfs/
　
looks like just a regurgitation of the UK NHS story:
　
http://wwwnhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx
　
I posted that on the other thread that is aptly titled "new PACE paper more SMC spin"
　
http://forumsphoenixrising.me/index...paper-more-smc-spin.34924/page-11#post-546984
　
Unfortunately for us the SMC seems to be getting better at what they do. As they previously boasted:
　
　
"The SMC engineered the coverage"

"the SMC has also helped to set the agenda and frame the narrative of reporting "

http://forums.phoenixrising.me/inde...cle-in-sunday-times.23050/page-10#post-360792 http://forums.phoenixrising.me/index.php?threads/horrifying-article-in-sunday-times.23050/page-10　
　
　
　

 

[taniaaust1]

I think that thank you to me may of been meant for another (unless I posted something else here I forgot).

 

[Roy S]

@taniaaust1 lol -- oops, then thank you for replying to Ren's post because I missed the edit that included that article.