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Opening Pandora’s Box: PANDORA Cozies up to IOM

Discussion in 'Institute of Medicine (IOM) Government Contract' started by NotAllInMyHead, Oct 16, 2013.

  1. Mark

    Mark Acting CEO

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    Simply a shortage of volunteers, as always. It is still on my list but I have had to turn my attention to more urgent business in the last couple of weeks. I hope to get it sorted out this week.
     
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  2. Mark

    Mark Acting CEO

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    It was removed inadvertently...should be back now.
     
  3. Nielk

    Nielk

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    Thank you!
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I just got the PANDORA November Newsletter. They say that "many patients and experts have been making demands on government officials that are based on misconceptions and not likely to succeed or lead to the best solution." They don't state what these supposed misconceptions are, but seem to imply they are embodied in the list of questions sent to Wanda Jones.

    I have asked PANDORA what these supposed misconceptions are and I will post here if I hear back. I am not happy. [emphasis added below]

    Emphasis added
     
    Last edited: Nov 14, 2013
  5. Nielk

    Nielk

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  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @Nielk , you probably are aware of this, but just to clarify, my post is of a new, different document (PANDORA's Nov. newsletter) than the letter you just mentioned on the other thread.
     
  7. Nielk

    Nielk

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    Yes, Justin. I see that now. This is a current newsletter by PANDORA.
    They say they made two phone calls to HHS. I am guessing that they did not get any answers to their questions? They also sent a letter three weeks ago to Wanda Jones. Did they receive a reply?

    Why has PANDORA stopped promoting any actions against the HHS/IOM contract? If they have been refused any answers to these troubling questions, wouldn't it be more prudent to fight the contract until and if their questions are answered satisfactorily?

    I have posted a question on PANDORA's facebook page asking them whether PANDORA is in support of the 50 experts who signed the letter to HHS.

    Justin emphasised the following from PANDORA's statement:

    On what specific misconception are the 'demands' of patients and experts based on? If PANDORA is so 'enlightened', I wish they would clue us in. By 'us' I mean the clueless 50 experts, 171 advocates and countless patients.

    Is it a misconception that:

    HHS has signed a contract with the IOM to re-define ME/CFS?

    HHS is spending approximately one million dollars to do so.

    HHS refuses to adopt the CCC in defiance of 50 experts, 171 advocates and countless patients

    This is not what the CFSAC recommendation called for.

    HHS lied when they said they are canceling the action to contract with the IOM.....just to change their mind a week later.

    IOM will have non-experts on the panel.

    IOM has re-named GWI to CMI and consideres CFS a somatic disease needing treatments of anti-depressants, CBT and GET.

    Government contract can be broken.

    If PANDORA has knowledge that any of these are 'misconceptions', why hold back this information from 'us'?

    Finally, what does PANDORA consider 'the best outcome'? These vague innuendos are really disturbing at this time when we are fighting for our survival.

    Really, really disappointing!!!
     
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  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I got a timely reply from PANDORA, but it was an odd, bureaucratic answer. They said they received information from HHS when they did their fact-finding inquiries, and this information revealed the misconceptions. But they will not tell us what those are because they are not HHS' PR department. Releasing that information to other parties is HHS' job, which will be done when Wanda Jones reponds to PANDORA's letter to her. They hear that response will be coming soon, perhaps tomorrow.

    I find that a senseless explanation. If they supposedly know we are doing all this work for naught because of misconceptions they have confirmation of, they should let us know so our precious energy and time isn't wasted. The fact that they are not "HHS' pr dept" is a cop out.

    Are they now going to say they will not release the reply to their letter from Wanda Jones, when it comes, because they are not HHS' pr dept? Are they going to solve this by asking the same questions to HHS for a third time and so on?
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I got another speedy response from PANDORA. They say, the fact they got the information over the phone, as opposed to in writing, is why they haven't release it. Imo, they should have released it anyway.
     
  10. Ember

    Ember Senior Member

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    This better be good!:rolleyes:
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    another PANDORA response:

    "Two years ago, we had phone conversation with Unger. Two patients and a researcher misunderstood what she said. We let public know what Unger said she would do, but because we misunderstood, what we put out was wrong. To this day, some patients said we lied.

    We are not the HHS PR department. We could make a mistake, misunderstand or they could deny it because it is not received well.

    We could just hold this info, which we got for our board to make the best decision, and left it at that. But instead, we advocated for all patients to get this information because they deserve to know. And that was successful as they are putting out some information soon.

    In general, all advocates need to do what we did and find out the facts before we act to advocate for workable solutions."
     
  12. Nielk

    Nielk

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  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Gabby, I emailed and posted on PANDORA's Facebook on friday on this question, but have not heard back.
     
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  14. Nielk

    Nielk

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    I also posted on PANDORA's Facebook page asking them if the answers from HHS have satisfied them and what is PANDORA's position regarding support of the experts' letter.

    This is their reply:

    P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc. wrote: "Gabby Klein, no we are not satisfied with the answers. Please read Jennie Spotila's blog. http://www.occupycfs.com/2013/09/24/the-experts/ Most of what she says we agree with. We were disappointed that the recent FAQ did not answer all of the questions and did not have complete and clear answers to the questions they did include. The key to a successful outcome is going to be ME/CFS experts being on the IOM committee. We are holding off on any further action to see if they actually put ME/CFS experts on the committee as the State of Work says they are to do. If they do, that might be a good thing. The CDC has said that they will not adopt the Canadian CCC without a study and data. While we like the CCC and think it's a good start for an updated definition the expert letter does not solve the problem of getting the CDC to embrace it. It doesn't provide the study nor the data.

    Justin Reilly, The first 35 who signed the expert letter had not seen the Statement of Work which says the IOM committee is to particularly include ME/CFS experts. It was a misconception that the IOM committee would be made up totally of non ME/CFS experts. We do not know if those experts have now been informed that the IOM committee is to particular have ME/CFS experts, or that they were asked to sit on the IOM committee. The misconception existed that the money could be re-directed towards research. That is not the case. A misconception also existed that the CDC could be adopted without additional scientific study or review. The recent fibromyalgia definitions that the CDC adopted involved a study on an actual patient population of 829 previously diagnosed fibro patients and controls.

    We would have preferred that the experts would get together to do the required ME/CFS study and provide the data that is needed. We sent a letter to the experts telling them we would help them conduct a workshop, or do what ever it would take to validate the CCC. However, when we asked if they plan to do this, the answer was, "No, we don't have the manpower, money, or time.""
     
  15. Nielk

    Nielk

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    Does this mean that if the IOM appoints two or three ME/CFS experts to the panel, they believe that the outcome will be good? In what way will this result in something better than the CCC and ICC which had mosty ME/CFS experts?

    (my bold)

    Are you stating that the CCC is not based on any study or data? Do you mean to say that the CDC knows better than our 50 ME/CFS experts? If you mean the data from the current CDC study, why are they not waiting for that study to be done and all the results are in? Do you agree with the fact that Beth Unger refuses to use the two day exercise testing in this study?

    Wow! First of all even if the 35 did not see the SOW before signing their letter they, and 16 more certainly had ample time to review the SOW before signing the second experts' letter. Why is PANDORA trying to decieve patients about the real facts. This is spin and coming from an organization that represents and advocates for sick patients this is not acceptable and I would ask PANDORA to publicly retract this false statement!


    Who ever had that misconception? The misconception was the spin that the contract could not be canceled. Which was mentioned by PANDORA from their conversation with the IOM. (see your second position statement)

    This is not a misconception. Of course CDC could adopt it - they just refuse to do so.

    The CDC has done a number of studies on ME/CFS patients since Fukuda '94 yet, never agreed to change the definition.

    This is the statement that is really the most disturbing. So, you are putting the blame on the 50 experts, not the HHS/NIH,CDC for this mess/fiasco activity? If you are going to make an open statement like this, please show proof of it. The reason why researchers have not been able to do proper studies is because of the NIH. They have refused funding for the past 20 years to do proper studies! Dr. Ian Lipkin, in the recent CDC call, stated that his request for funding to continue his most important study has been denied by NIH. Why isn't PANDORA making a big noise about this? Why aren't all the patient organizations and advocates not up in arms about this fact? Dr. Lipkin advised us to demonstrate to our government just like the AIDS patients di in the nineties to get proper funding for this disease.

    I am so disappointed in PADORA's statements and inactions. I expected better.
     
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  16. Izola

    Izola Senior Member

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    We were caught off guard. Its obvious that the plan was to catch us off guard. For those who believe that the CAA does not represent us, we need to let that be known, LOUDLY, no matter what the out come with the IOM. They have used us as their own weapon. We got burned. We've lost some time but not the war. Keep fighting. Can we use the front page of the Forum to keep the eyes and minds on the IOM war?
    It takes a ton of reading and rereading for me just to digest the facts. Many thanks to you and all of you who organized the chronology, reorganized the presentation of the IOM facts and forum comments, and subjects so we could access them faster. And then you set up petitions and outlined the means for contacting other political powers that be.
    I think yours was a good response in the face of what existed. We're learning more about tactics and strategy, And there are voices on the forum that reveal a high level of political savvy. We have a pretty good learning curve in spite of the hell we go through just to read and write. Let us encourage each other and not give up the fight.
    I have a question, Does the U.S. not recognize the World Health Organization and its more enlightened understanding of M.E.?
    I can only get my head around simplistically, but in response to the asserted requirement of research studies before they are able to issue disease research and clinical criteria--where are the studies for the Holmes or Fukuda definitions, and the other crazy (like a fox) definitions for ME they issued? I would have loved to see them--but they don't exist. We're simply being jerked around. There is nothing that indicates the need for a huge private research study being presented to the government before the government can issue CRITERIA FOR RESEARCH. Does that make any sense at all. They're trying to push us back down the rabbit hole. Don't go. Ask them to cite the Federal Laws and regulations that govern each disputed assertion or action. They can claim all the crap they want until we hold their feet to the fire to make them back up their assertions. And, there are other things we can do but I, personally don't know what they are. Others do. Izola
     
    Last edited: Nov 23, 2013
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  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    @Izola, countries are allowed to put out their own versions of ICD, if those versions are approved by ICD. Only a small handful of countries have their own ICDs- US, Germany and Canada I think and that might be it. I believe in the current ICD-9 CM (what the US one is called), ME or 'benign ME' appears only in the index and it says "see CFS". The ICD-10 CM and ICD 11and DSM 5 fights have been going on for quite a while, spearheaded by Suzy Chapman who blogs on it. This stuff is important and something to get back to when the redefinition fight is less urgent.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree, Gabby. Also like to add that as Andrew pointed out, this new definition is going to be distributed apparently without any field testing or validation. At least CCC has been validated and has also stood the test of time.

    I have defended PANDORA up until this point as not being in the same category at all as CAA. PANDORA has at least done some advocacy, though it has been too tepid. This response really makes me question my idea of where they're coming from. If the name of PANDORA had been taken off and I were shown this a month ago, I would have said 'this came from CAA, no doubt about it."

    PANDORA is too smart to really believe this, it seems to me. It looks like PANDORA has gone to that dark place where CAA is. That really saddens and disturbs me.
     
    Last edited: Nov 23, 2013
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  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    How can PANDORA say that IoM might pick a good panel? The chances of that are so remote that they are not worth considering.

    Just look at the virtual rogues gallery that is the GWI/CMI redefinition panel of know-nothings, psychiatrists, psychologists, 'unexplained illness experts', former CDC, NIH and VA employees and which is chaired by a past-president of IoM who did not reveal that he is a director of UnitedHealth Insurance company! Never mind the independent report blasting IoM for apparently never checking for conflicts of interest or bias on its panels!

    http://forums.phoenixrising.me/inde...-cmi-redefinition-panel-it-aint-pretty.26553/

    http://forums.phoenixrising.me/inde...s-in-picking-panels-report.26600/#post-406352
     
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  20. Snowdrop

    Snowdrop Senior Member

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    We may not like what conclusions will inevitably be drawn by the IOM panel but this time round we are there to hold them accountable all through this process. They might run the show but they can't hide anymore, we're watching and we will make sure that their spin is out in the open for all to see.
     
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