Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ecoclimber, Oct 5, 2013.
Wildaisy posted this response here today:
Jennie's latest blog is rather good at summarising the various views and activities to date. Relevant thread is here.
Good. Advocates need to start burying hatchets and not in each others' backs!
Comment from Lucinda Bateman:
What they state publically and what they do privately are two different things. I agree that their statement is powerful and support it but I am also concern about the behind the scenes activity that is not being communicated to the patient community. Why is that?
A discussion on Pandora's actions and thier recent behind the scenes activity is located here:
PANDORA and CAA are recruiting people to serve on IOM Committee
This is a must read by David Egan: Strategy for dealing with HHS and IOM problem.
ME/CFS Patient’s Strategy for dealing with HHS and IOM problem
Last week I posted a message detailing the strategy now being used by the HHS and IOM in coordination with NIH and CDC. This week I offer a strategy for dealing with this problem.
Pincer Movement It is now very clear the wessely school psychiatrists are preparing a pincer movement against ME / CFS patients and organisations. The first spearhead of this pincer involves the Dept of Health in the USA which is re-defining ME/CFS and is using the exact same process they used to re-define and categorise Gulf War Illness as a psychological syndrome, requiring CBT, GET and psychiatric drugs. The IOM working for the Department of Health (USA) did this and is now going to do the same to ME/CFS. The main player in this new attack is Anthony Fauci a personal friend of Dr. Straus (NIH) and Dr. Reeves (NIH) and Dr. Wessely (Britain). He is head of one of the main institutes of NIH and a director of IOM. He believes that ME/CFS is psychological. He is suspected to be personally advising Secretary Kathleen Sebelius, Secretary for Health there. The NICE clinics in Britain and their "diagnostic protocols" will be studied by IOM. And provision has been made in the terms of reference for including psychiatrists, psychologists, nurses and physiotherapists and their supporters on the IOM panel. Also non experts will be included, who may have prejudice against ME/CFS patients.
The aim of IOM and HHS handlers is to get ME/CFS categorised as a psychological illness. Thus USA and Britain will be under the control of wessely school psychiatrists ; representing two flanks of attack. Furthermore, the DSM manual used by psychiatrists has been recently changed to list ME and FM as somatic disorders. In Denmark a psychiatrist has forcefully imprisoned an ME patient in a psychiatric hospital, and is trying to set his own agenda of ME treatment ; his main influence is british psychiatrists. He is using terms such as "bodily distress syndromes" and somatic disorders. These are two additional flanks of attack. In Britain NHS hospitals and clinics are designating ME as "bodily distress syndromes". There are plans in Britain to integrate this into NICE clinics. In military terms these actions by wessely school psychiatrists and their supporters are called 'pincer movements' designed to surround an enemy and crush them. This is what ME patients are up against.
Strategy for ME/CFS patients and organisations
I would advise all here on this forum and every ME/CFS patient on every facebook forum, and in every community and country to read the “Art of War” by Sunzi. Its over 2,000 years old and its required reading and is examined in Harvard Business School and other top schools worldwide and in West Point and other great military academies worldwide. I have included a link to the book below.
A good strategy, based on the ‘Art of War’ could proceed as follows:
1. Firstly we are dealing with life and death issues. Innocent Americans will continue to die of ME/CFS and its complications including heart failure, Cancers, opportunistic infections and suicides if the IOM designates ME/CFS as a psychological illness in the same way it designated Gulf War illness as psychological. Thus a psychological definition for ME/CFS has the same effect as murder. So this campaign / strategy below involves a life and death matter for Americans (and others) and must be taken very seriously.
2. Contact all your friends, family, extended family including cousins, uncles and aunts, associates, fellow patients, buddies, school pals, etc. and get their support in gathering information within IOM, HHS, CDC and NIH.
3. Know the Enemy. Who are the main players behind the scenes. We need to find out the names of the people advising Kathleen Sebelius about ME/ CFS. This would be senior figures in NIH, IOM, CDC and HHS. We need all details about these advisors, everything you can get. All contact, all details of correspondence, their game plan, behind the scenes conversations, final outcome projections, etc. etc. I’ve been told that Anthony Fauci is one advisor, and that he was a close personal friend of Dr. Straus and Dr. Reeves and he believes that ME/CFS is psychological.
4. Strategic Placement on the inside. Get people in your organisation to join this IOM committee and workshops and other stuff they are at. Get them to watch and listen and acquire info and report back. Get a small minority of your people to pretend that they support the psychological and psychiatric agenda at these IOM meetings and workshops. They will draw out information from psychologist and psychiatrist supporters. This will be valuable information. Acquire all types of information, confidential, private, everything, - they cannot be forced to keep quiet, as all confidentiality and privacy clauses are deemed null and void if the lives of Americans are at stake.
Find out their social life schedule, mix and socialise, in canteens, restaurants, bars, nightclubs - a lot can be learnt from drunk people in bars and pillow talk in bed. People at the top of organisations are egotistical and boastful.
5. Identify the enemies of these advisors and string pullers within their own organisations and outside them and use them for info. Jealousy, envy and ambition is rife in all organisations.
6. Money talks in Washington DC, use this to get info also.
7. Identify all the weak points and all the vulnerabilities and all the conflicts of interests of the people pulling the strings behind the scenes.
8. Get your people working inside IOM to demand the following people be included on the IOM panel
John Chia (USC), Jose Montoya (Stanford), Dan Peterson (Simarron Institute), Lucinda Bateman (U of Utah), Alan and Kathleen Light (U of Utah), Nancy Klimas (Nova University), Mary Ann Fletcher (Miami), Martin Lerner, Paul Cheney, Maureen Hanson (Cornell), Gordon Broderick (U of Alberta), Charles Lapp (Duke), Anthony Komaroff (Harvard), Ben Natelson (NJ College of Medicine), Susan Levine, Ian Lipkin (Columbia), Derek Enlander (Mt. Sinai NYC) - and Chris Snell or Stavi Stevens.
This has been recommended by Mary Schweitzer, ME/CFS advocate.
9. If psychological people are on panel, then set up divisions within themselves and between themselves and others. Divide them against each other. If this leads to arguments, threats, walk outs, and quitting etc., well this is the price that psychological supporters should pay for destroying the lives of so many patients.
10. Apply pressure from the outside in. Keep contacting congressmen, senators and elected officials and demanding the Canadian Consensus criteria and ICC 2011. Show them the letter signed by 35 ME/CFS doctors sent to Secretary Sebelius. Apply pressure every week. Keep at it non-stop.
11. Keep contacting the US press and media and feed them the Canadian Consensus criteria and ICC 2011 and stories about ME/CFS patients who died and who are suffering. Apply pressure every week.
12. Make provision for a fallback position. If the IOM refuse to cooperate and decide to move as predicted in the direction of psychological diagnosis and treatments, then prepare legal challenges in the federal courts to the IOM’s final decision. Start with legal cases such as acting against the public interest, abuse of human rights, judicial review, abuse of powers, over-reach of powers, conflicts of interest by the main players / advisors, get court orders of performance (to implement CCC 2003 and ICC 2011), nullification of IOM’s decision, etc. There are several legal routes of attack.
13. Further fallback position would involve patients and patient organisations making a joint unified decision to reject the psychological definition of the IOM and deciding to only accept the CCC 2003 and ICC 2011 and sub-contracting outside the USA to get diagnosis and treatments. This would involve buying foreign health insurance and going to a nearby country using CCC 2003 and ICC 2011. American corporations regularly subcontract out to other countries, so private citizens should be able to do so when the government fails them. This subcontracting would be major embarrassment to the government and HHS and NIH and so called “Obama care”.. The press and media would really enjoy this news story.
As Rome Burns, We Fiddle Away
First off, the information in this post is a communication to all the Fibromyalgia, Chronic Fatigue Syndrome, Lyme, GWS,GWI, Gulf War Veterans patients and their groups and blogs and not just here on Phoenix Rising. This information will be picked up by the various search engines.
Here is the problem with the current HSS contract awarded to the IOM :
The Gulf War Veterans had a Congressional Mandate and huge support from members of Congress. They had 15 years of scientific data; they had powerful groups including the news media backing them; they went throught the same dog and pony show of nominating their members that we are currently going through but to no avail.
The script has been written, the plot is in place, the ending is known. Now, they are just recruiting the bit players for thier 'staged' production.
After the fact of the outrage from the VA Gulf War Veterans patients, hearings were conducted (by the way, this is a tatic used by the administration to allow the veterans to vent without any action taken on their behalf), newpaper articles were written to no effect. This is a typical political ploy or manuvering by politicians.
But, the final process has been decided on how to treat the Gulf War illness within the medical establishment and by this administration. Once the decision is in place it will not be overcome anytime soon.
The IOM raised the bar so high with regards to causation, that most data fell within the psychogical/social sphere
In comparison, the ME/CFS patient community is extremely weakened in a far greater degree on this issue than the Gulf War Veterans. We are less well known and do not have the power advocacy groups as the Gulf War Veterans. The decision is a foregone conclusion. Writing to Congress will not avail the ME/CFS group much leverage. Petitions mean nothing to this administration other than the possibility of news organizations suddenly showing an interest so please do keep signing away! It is important. However, this is an Executive Branch decision.
To my knowledge, there are only three successful strategies that can be employed given short time frame.
1. Injunction for Relief
2. Get this information out to the social media and the news media outside of the patient groups. Something that will go viral on the internet. Something similar to 'Act Up'as Lipkin pointed out to our group. He inferred our group needed shock value. I suggest to start referring to the IOM panel as a 'Death Panel' (which it really is...death to future medical research, death to medical treatment, and eventual death to patients for lack of treatment) a tactic used by opponents of Obamacare which created staging point for conservatives to rally around. It would embarrass HHS and the Executive Branch. This issue should be at the forefront of every blog post now until resolution of this issue!
3. Monitor and document the process for later litigation. This means monitoring by outside groups such as news media organizations so HHS and IOM will be cognizant about this constant surveillance.
The lack of Critical Mass and the tepid response from this community is disheartening. This is a life and death issue for patients. This will determine your care for the rest of their life! We have 230 people signing on PR at any one time and most of you are posting about treatments or complaining about your illnesses.
This should be the primary focus of everyone. Why? Because it raises this issue within social media. In Google or other search engine results, it causes the issue to trend toward the top of searches. But so far we have only produce an anemic response to this critical issue.
So I have become disheartened and I'm disengaging from this cause. I cannot help people that are unwilling to help themselves! I know that most are sick but if you can post on here about treatment options or complain about your symptoms, than you certainly can make a posts to support or discuss this issue and to raise awareness in other social media circles! The postings must be continue until this issue is resolved in our favor! Your life and treatment is dependent on this issue.
Every post on here, Twitter, Reddit, Facebook, YouTube, Blogs raises this issue in the social media world! It raises the issues in search engine results. Media organizations keep track of trending topics and issues and then report on them. If this issue is buried in the social media world, than this cause is going nowhere.
I measure the statistics. Every Fibromyalgia and ME/CFS, Chronic Fatigue Syndrome patient must blog this on their post continuosly until we have a favorable resolution.
To date, the response has been less than stellar. 5 or 6 comments on major blog sites is not signicant! There are very few blogs posting on this from the communites that have the most to lose: Fibromyalgian and ME/CFS.
We have to resort to political guerrilla warfare tatics which means harnassing the social media to our benefit.
Final Note: It usually comes down to the 10% of the people doing most of the work. It becomes tiresome after awhile for those who do the work. I must report that the advocates are getting tired from shouldering most of the work. Many are sick like yourselves and cannot continue addressing this critical issue unless more of you contribute. Many are getting discouraged. This issue will seal the fate of the ME/CFS community in the foreseeable future.
I am speaking just not to this community but to Fibromyalgia and Chronic Fatigue patients everywhere on the internet.
Unfortunately I wasnt well enough to follow up on the gates I opened for us with my ME/CFS demonstration as no else over here (in SA) seems to have much true interest in helping change things over here.. so my effort has gone to waste. (I dont even know now where I have put the phone number and name of the head or one of the head people from the conference who was going to talk to me about getting our research at the medical conference next time after security brought me to her attention and why I was there. The thing is it DID open up a door which could of been used by us to get our good research scientifically heard and out there properly to the general medical community had another here in this state been helping me and followed up with the door I opened.
Unfortunately very sick individuals just cant do it alone (and often it is the very sick trying to do it due to the desperation being very sick brings). This is why we need groups of individuals working together with a plan to help bring in change with people each doing a bit. Unless we start working together.. things are never going to change. We can open up the doors we need with the right actions.
I used to volunteer for political action with Sierra club. We used our own book on the subject, but used EMILY'S List's contact list of media which was encyclopedic.
I think we need to get together a contact list of blogs and other media on health, healthcare and politics/federal govt/public policy so we can bombard them about stuff like this. The sooner the better obviously. Maybe another disease org has such a list, maybe gulf war, Lyme, autism orgs, etc. For autism kent heckenlively, I think is his name is a great contact thanks to Hillary Johnson. The cure unknown author for Lyme, also thanks to Hillary J.
If people thing things are bad now, just wait till that happens and then we will be totally screwed as no one will want to hear about things from psych patients who are probably just exaggerating things (that is what people, the media etc will then think). Our ability to be heard is about to get way way harder. Maybe they can bury us as long as those secret English ME/CFS files are closed.
Be careful of presuming that this is just about psychobabble or insurance companies influencing government. That is happening, but so is hardline economic reform thinking in government and its agencies, and mutual support for political agendas that want to see changes along the lines proposed by the BPS advocates. Its all connected. This isn't just global corporate giants in insurance, or a large psychogenic medicine movement pushing BPS as though it were anything other than psychogenic medicine. This is prevailing economic wisdom that is under attack for multiple failures in recent years. This is a global failure of investigative journalism as budgets are slashed, journalists lose their jobs, and the emphasis is changed in the media.
In other words, this is a systemic juggernaut. However the tentacles of this monstrosity are everywhere, creating issues for all of society. That creates a lot of potential allies. We also have allies within psychiatry and medicine in general, people who see problems and want to find solutions. There are economists and financiers who see the other side of the picture, and politicians calling for a re-invigoration of politics.
I doubt we will win this alone. I think we cannot lose in the bigger picture though, but we can suffer serious harm in the meantime. We need allies. So do they. Lets go find them, whoever they are.
You just can't make conspiracty theories on what you think might be happening. I would like to see the hard evidence. Where is the documenations to his accusations. Show me were he is getting his imformation
Im not making a conspiratoy theory.. Im refering to those files which have had a crazy time limit put onto them before they can become public viewing, so long that we will all be dead by then. Ones myself and many others would like to see... locked for 50? 70? years... Ive forgotten now how long now. The ones people have tried hard to get made public even by taking up legal recourse to the info (this year?, last year? it wasnt that long ago that someone took this to the top to try to get access) but keep being rejected on stupid grounds of needing to keep the privately of people who spoke but if its that, why dont they put them out with just the names of those people blocked? It makes no sense unless they truely are hiding something..
My memory fog makes me unable to remember exactly what the files were to do with ..but it was some kind of English gov CFS investigation thingy. I hope someone will give you more info on what Im refering too as it is well known fact whichdoes have documented evidence of files which they refuse to release..
My Reply wasn't to you specifically. Sorry you took it that way. I was referring to David Egan, You are talking about the 70 FOIA law on accessing certain records in the UK. I know, it's crazy
Principled Approach: Fighting the IOM Contract is a Moral Imperative
By Jeannette (Sick and Tired)
Posted on October 13, 2013
Some thoughts for discussion.
If heading towards the Niagara Falls (I like the metaphor) in a canoe, then what's the best things to do?
Best not to paddle forwards or backwards but to direct the canoe across the current towards the river bank?
In other words, perhaps there are more than two options?
And maybe we need to work out what a third option might be?
If they are determined to go ahead with the process despite our protests, and they develop a new diagnostic criteria anyway, they will still use it, and force it upon us. Just as Fukuda has been forced upon us for the past 30 years or so. We will continue to protest, and complain, but we will not be heard.
For that reason, my opinion is that perhaps it's best to try to have influence on the process, to at least minimise the damage that they can inflict upon us, by attempting to exert influence on the proceedings. It wouldn't mean that we'd have to endorse the outcome. We could still protest at the outcome.
If we were to boycott the proceedings, would it make any difference? Perhaps that would just make it easier for them to ignore us. If we attempt to get involved assertively, loudly, and constructively, then perhaps we can later say that we were ignored and disenfranchised, if they ignore us. Whereas if we boycott the proceeding, then it will be difficult to say that they ignored our input, because there wouldn't be any input.
Perhaps we can continue to campaign, and to write letters setting out our opinions about how ME needs to be separated from chronic fatigue, and that ME isn't a fatiguing illness, and that ME isn't a case prolonged fatigue, or deconditioning, or a fear of activity etc etc.
Well, just some thoughts, for discussion. I don't know what the answer is, and I'm sure I'll change my mind a number of times. Like I said earlier, perhaps we need to think of a third option that we can all buy into.
Bob, the primary position has to be to stop the IOM. However this has a low likelihood of success. Those directing this, whoever they are, expect a protest. They expect us to try to stop it, they have planned for this. What you are proposing is something I have raised several times now, damage control. How do we limit the damage if we cannot prevent it? However I suggest this belongs in a separate thread, not in a thread on stopping the IOM.
Let me point out that there are one or more large PR companies that specialize in undermining advocacy. One such wrote a book on it, but I forget the details. This is now mainstream PR. The environmental movement is an example of advocacy that many now think is highly compromised.
I forget all the tactics, I will have to look for one of the articles and post it here. However one thing they do is to offer an olive branch ... options to be part of the process and have a say, influence the outcome, or move toward the goal. What eventuates is small improvement in the situation from the moderates, enough that they don't want to stop cooperating. This sidelines them to near irrelevancy. Does this sound familiar? Like any advocacy organizations we know?
Because the moderates join forces and engage in positive advocacy, the more extreme positions are exposed. These people are then spun as radicals, dissidents, militants, even terrorists. So they are marginalized, ignored, and become ineffectual.
Let me emphasize again, this is not a conspiracy theory, but published strategy from PR companies, their resume.
The other thing that happens, although this was covered in other things I have read, is they establish commissions with limited or highly directed terms of reference. Only certain outcomes are then possible. By controlling who does the investigating, and the criteria they use to investigate, the outcome is likely to be only within limited options.
Does any of this sound familiar? The sad thing though is this is NOT a conspiracy as the term is usually used. Its now mainstream. Its how things work. That is the reality we have to deal with. As the interests of many different groups align, they cooperate. This again not a conspiracy, its how things work. In our case that includes the BPS school of psychiatry, hardline economists and those they influence, political ideologies involving thrift and responsibility, and the desire to curb a future explosion in public spending.
Now many of those people will have discussions behind closed doors. Thats not illegal. We do too. To cross that grey line from normal to conspiracy requires a bunch of things, and I do not doubt that it happens sometimes, but I think that most cases are explained by an insidious phrase: business as usual.
You know, it would be excellent if those blogging about all of this, and those expressing a strong desire to see Phoenix Rising publish an article (again) about it: could all get together and come up with a draft.
Personally, I wouldn't want any article to dwell on speculation or on fear or necessarily on blame. A clear outline of the situation, where we are now with the Fukuda (essentially) criteria, the means of diagnosis, the testing, the treatment (in short the situation in the USA today); and where we might end up - with CCC perhaps or something based on CCC, or even (if you think it likely) a reversal of the current position. Followed by an outline of options that people might take should they wish to take any action (assuming said action is realistic - in the author's judgement and based on evidence if any exists e.g. cancelling a contract with IOM).
I don't know, I haven't thought it all through in terms of what an article might contain, but rest assured this has been on my mind last night during the hours when I couldn't sleep. Being 'accused' of not doing something - well - it pisses me off frankly.
All those who work here on Phoenix do so voluntarily and all are sick with ME. If anyone who has this particular bee in his/her bonnet wants something done about it - then do something about it and stop relying on others to do it for you.
There are those on the content team who are happy to work with anyone who wishes to submit a draft, or outline for an article seeking to address these issues. I strongly suggest however, that a small group of our regular posters get together and come up with something after having given some more thought to how you will engage with the community as a whole. Because it is their support to your suggested action that you need and certainly not mine.
Having looked briefly at viewing stats I can say that articles relating to advocacy receive less views and comments than other articles. I have read on these threads comments expressing frustration at the apparent lack of support for your petitions etc. from the community as a whole - some comments suggest patients are themselves to blame! So you might want to think a bit more about how your article can reach the parts that others have perhaps not reached before.
Or you might just want to write a joint statement. I have no idea...
I'm not focused enough to read everything recent here, but I saw some comments regarding the Which Paddle article over at Occupy CFS. I posted a reply there, and I'm going to quote it here. Since posting this, I feel more and more sure about what I said. But not 100% sure.
I believe we need to shed a spotlight on what they are doing. All this secrecy, behind the back maneuvering by HHS needs to come out in the daylight. We know their intent and we should call them on it. Let them know that we know what they are planning to do. This way it puts them on the defensive.
On the petitions we should state the fact that HHS is planning to keep in place and to enforce a pyscho/social therapeutic modality on patients with ME/CFS which they have been doing based on the extreme influencing and lobbying efforts of Major Corporations in the Medical, Health and Disability Insurance industries to keep this illness hidden disgarding any and scientific proof so that our illness ends up in the Psycho-somatic realm.The only evidence allow in the last contract was evidence based involving psycho-somatic modalities which included groups that didn't have Gulf War Syndrome.
There is a strong psychiatric push consider the percentage psychiatrists that head major organization within HHS which seems unusual.
This is NEW IOM contact is a continuation but a variation of the Tuskegee Institute Study but this time the ME/CFS patient community is involved in their experimentation.
Like the Tuskegee Institute Study patients we do not receive medicine to help us overcome this ravaging illness, which causes us to soon succumb to cardiac arrest, Cancers (non- Hopkins lymphoma), suicide, or simpling wasting away crawling from their our beds to the toilets, or living in cars, or experiencing homelessness...housebound and bebound without adequate care.
The HHS and the IOM contract is nothing more than sham, a mere covering of all these facts under the cloak of betterment for the ME/CFS/Fibro Communities. But in reality, this committee is no way impartial considering the significant donations by members from the worst top ten insurance agencies. WellPoint who can’t decide if they’re a health and disability company or a law firm defending multitudes of class action lawsuits arrayed against them. Then, we have Unum who spends hundreds of millions of dollars to change healthcare policy and law against those who are disabled. It would be nice to join sides and have them invest in research so that we would not be disabled and be able to return to productive lives. It would be a win/win situation. We have a 35 history on how the NIH as treated us with regards to funding.
However, what we have before us is another ingenuous ploy to keep this and other patient communities awaiting the verdict from the IOM DEATH PANEL as to the categorization of our illness and the treatment allowed. This information will be disseminated to all medical clinics throughout the country. We already know the outcome by Secretary Kebelius.
After more than 30 years which caused a sudden destruction in our lives, finances careers, families, future plans, we ended up suffering from the most debilitating illness that only last stage cancer patients and HIV patients experience in their last few months before death. We experience that same death like grip on our lives every single waking second, minute, hour, day after day, week after week and year after year until we become so weak that we succumb to secondary infections.
The technology is advancing at an incredible speed and with over 4,500 scientific published peer review articles to date stating an organic/biological etiology to this illness supporter by 34 researchers and clinicians in the field for over 30 years which cannot be ignored. To do so would be malfeasance in office.
Finally we will not be part of any new study similar to the CDC Tuskegee Institute Study where the CDC violated their oath of office as administrators and doctors to provide the best care available to patients. We will not be part of the IOM death panel decision which similarly occurred with the VA IOM reclassification of the GWS to CMI. Each day, 18-22 veterans commit suicide from your from their successful therapeutic approach of anti-depressants, cbt/get, talk therapy, St. Johns Wort, acupuncture.
There have been more veterans who lost their life in suicide than who were lost fighting in the varios theaters of operations. Is this the payment we offer our veterans who put their lives on the lines to secure Freedom within this country? How do you live with the moral consequences of your actions! Perhaps Representatives on the appropriations committee should slash HHS funds going to the VA, HSS, CDC and the NIH if this the cumulative result and outcome of their therapeutic interventions. Perhaps a RICO action should be filed against some heads of agencies.
Pateints will not stand in any way, shape, or form for a decision similar to the IOM death panel with the VA. We are watching.
OFFICE OF INSPECTOR GENERAL OF THE DEPARTMENT OF HEALTH AND HUMAN SERVICES.
Perhaps another area to regist a compaint with the Office of Inspector General in awarding of the IOM contact. Issues of conflict of interest, lack of disclosure and transparency, violation of adminstrative procedures, the objections of the 34 ME/CFS researchers, IOM is not an impartial board and is being influence by the Insurance Industry, a kangaroo court
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