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new blog from Jeannette, HHS and the IOM Saga, Jan 2 2014

Nielk

Senior Member
Messages
6,970
Thank you, Jeanette for walking us through this whole process and pointing out all it's inadequacies/fallacies.

I wanted to point out this section:

What are they “studying” anyway? Without going into depth on the issue because it is beyond the scope of this post, let me just mention that studying two completely different disease entities, ME and CFS, together, is as unscientific as it gets. ME is not CFS and vice versa. The name Chronic Fatigue Syndrome was deliberately chosen by the CDC to muddy the waters because it can be, and is, used interchangeably with fatiguing conditions, such as deconditioning, psychological diseases, such as depression, as well as conditions that are not even illnesses, but produce fatigue as a symptom.

Many patients do not understand the difference between ME and CFS because the government has done a good job at creating confusing around the two. Even some experts do not keep them separate. Worse, they use the dreaded term “chronic fatigue” for ME all the time, a source of never-ending frustration for patients suffering form the debilitating effects of ME. Some experts openly admit that they are treating people fatigued due to medical conditions other than ME or due to mere deconditioning. With an unscientific status quo like that, how could the non-experts on the panel possibly understand the distinction? It’s just not conceivable that a decent, scientifically accurate definition of ME could be produced by this particular IOM committee.

As if to confirm the point, the IOM, via its listserv, announced that the first IOM meeting will be held on January 27-28, 2014 during which one objective for the committee is “to clarify the scope of the charge ….” In other words, the IOM is unclear about what it got hired to do, which is outrageously pathetic and mind-blowingly unprofessional. So the IOM is wondering what the heck they are going to be paid the sum of $1 million for. I might be cognitively impaired, but I am quite certain that I have never advised a client to enter into a contract with an uncertain scope.

How does one even pick a panel for the “study” without knowing what the panel will be doing? Seriously, this is not a rhetorical question.

I was pretty disturbed myself when I heard that the IOM is looking for input from the patient community as to the "scope of the study"????

This whole affair seems to me as if an exchange in the back of a dark alley. I am imagining an HHS representative and an IOM representative wearing dark glasses and grey raincoats meeting up there. The HHS'er shoves over a metal suitcase full of one million dollars in cash. The IOM'er asks 'what is this for, exactly?'. The HHS'er hushes him and says: "you'll figure it out later. Just take these pesty CFS'ers out of our hair. Make it sound like we are doing them a great favor and you know....just do onto them what you did with the GWI'ers."

Seriously, how professional is this?
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
wow.. what a letter and I hope people here can get throu as much as it as they can (I cant get throu it but what I did manage to read is exactly as I thought but with no proof of this as far as that contract can be terminated goes).

A huge thanks to Jeannette for putting so many of my thoughts into words (Im glad to see that Im not the only one seeing red flag after red flag) and doing this for everyone.

I hope someone can put together a thing of the highlights things in that letter (maybe a list of red flags keeping each point short) so those who cant read it can be advised of some of the important facts that they may not be thinking about now.

or maybe someone can break that letter down so it can be put onto different pages? instead of one big letter, so people can stop and came back to where they were at later when reading it. Im disappointed I cant get throu the whole lot and will not be able to come back and find where I was at again.
...................

Even if the recovered money won’t be re-allocated to HHS’ budget, it’s not like the IOM would get to keep it. It will go back to Treasury, and, thus, the taxpayers. And maybe HHS can re-direct the money to other IOM-related tasks, such as fixing the defective Gulf War Illness (GWI) report(s) by, at a minimum, reversing the name change from Gulf War Illness to the outrageous name Chronic Multi-Symptom Illness and by clarifying that antidepressants, cognitive behavioral therapy (CBT) and graded-exercise therapy (GET) are inadequate band aids at best, not treatments of the underlying serious disease.

I really like that idea.. great thinking. Any money from the terminated contract SHOULD go towards fixing the GWI report by OMI. I'd gladly donate our OMI money to do that!!
.................................

Potential non-compliance with competition rules. Furthermore, HHS seems to have entered into the contract without complying with federal-contract acquisition requirements applicable to a no-bid contract. I filed two complaints regarding this potential violation, one with the Inspector General (radio silence despite my following up) and one with HHS’ Competition Advocate. The latter forwarded my request for investigation to HHS’ legal department.

Umm are they seriously going to investigate their own dept properly? (I dont hold much hope on that). Is there a higher up people or dept or org or something who can investigate the HHS and what has happened here? What is above the HHS?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I think using that info that Jeannette gives in her link.. we could use the ridiculous of what is going on now to gain public support (so what is happening could end up being a good thing if we can use it to get general public attention on our plight and on ME/CFS).

I suggest if anyone is up to it to do a news article for www.care2.com on this whole situation (in a way in which non ME/CFS people would see the unrightness of things) and then also do a petition there (to send somewhere). I think petitioning on this matter should be continuous.
 

Izola

Senior Member
Messages
495
Thank you, Jeanette for walking us through this whole process and pointing out all it's inadequacies/fallacies.

I wanted to point out this section:



I was pretty disturbed myself when I heard that the IOM is looking for input from the patient community as to the "scope of the study"????

This whole affair seems to me as if an exchange in the back of a dark alley. I am imagining an HHS representative and an IOM representative wearing dark glasses and grey raincoats meeting up there. The HHS'er shoves over a metal suitcase full of one million dollars in cash. The IOM'er asks 'what is this for, exactly?'. The HHS'er hushes him and says: "you'll figure it out later. Just take these pesty CFS'ers out of our hair. Make it sound like we are doing them a great favor and you know....just do onto them what you did with the GWI'ers."

Seriously, how professional is this?




I'm so pleased you all have laid this all on the table. The first issue really has been concerning me. I like many, have a leaky brain. I don't remember whether its been stated point-blank any where in the IOM Forums that CFS and ME are different. Also, now I can better understand the rest,
 

Izola

Senior Member
Messages
495
wow.. what a letter and I hope people here can get throu as much as it as they can (I cant get throu it but what I did manage to read is exactly as I thought but with no proof of this as far as that contract can be terminated goes).

A huge thanks to Jeannette for putting so many of my thoughts into words (Im glad to see that Im not the only one seeing red flag after red flag) and doing this for everyone.

I hope someone can put together a thing of the highlights things in that letter (maybe a list of red flags keeping each point short) so those who cant read it can be advised of some of the important facts that they may not be thinking about now.

or maybe someone can break that letter down so it can be put onto different pages? instead of one big letter, so people can stop and came back to where they were at later when reading it. Im disappointed I cant get throu the whole lot and will not be able to come back and find where I was at again.
...................



I really like that idea.. great thinking. Any money from the terminated contract SHOULD go towards fixing the GWI report by OMI. I'd gladly donate our OMI money to do that!!
.................................



Umm are they seriously going to investigate their own dept properly? (I dont hold much hope on that). Is there a higher up people or dept or org or something who can investigate the HHS and what has happened here? What is above the HHS?


This came to mind straight from 1965 Washington D,C. U.S. Government Accountability Office, the GAO. Non-partisan--as much as can be in DC.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
(I cant get throu it but what I did manage to read is exactly as I thought but with no proof of this as far as that contract can be terminated goes).

OMG.. I dont even know what that was supposed to say, my own past post isnt even making any sense to myself. Obviously I've screwed up words in it or something. Ive havent a lot of trouble of late with leaving out words or putting in completely wrong words which can change what my posts are supposed to say.

sorry, ignore quoted part above of that post.

If peoples ever see me saying anything that they dont think I'd usually say, please let me know.
 

Izola

Senior Member
Messages
495
OMG.. I dont even know what that was supposed to say, my own past post isnt even making any sense to myself. Obviously I've screwed up words in it or something. Ive havent a lot of trouble of late with leaving out words or putting in completely wrong words which can change what my posts are supposed to say.

sorry, ignore quoted part above of that post.

If peoples ever see me saying anything that they dont think I'd usually say, please let me know.



In sympathy, all I ever do these past few weeks is (months?) to say or do the wrong thing. You, on the other hand, are so articulate. Take care. Izola