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.What has become of these permanent, prominent links?
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, 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.
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.What has become of these permanent, prominent links?
It was removed inadvertently...should be back now.In addition, I noticed today that the special link to the IOM forum is gone. @Mark?
It was removed inadvertently...should be back now.
Emphasis addedFinding Out the Facts before We Act
Recent controversy over the Dept. of Health and Human Services and Institutes of Medicine contract to do a study to solve the controversies over ME/CFS definitions has put our organization in the crossfires. Many patients and quite a few experts have signed letters asking the contract to be canceled and the 2003 CCC to be adopted by all HHS agencies.
Starting in August, when all of this started, we worked to get accurate information to make sure we match advocacy passion with workable strategy that will lead to the best solution. This led us to discovering that the HHS has not clearly communicated to patients, Chronic Fatigue Syndrome Advisory Committee members and ME/CFS experts. The result has been 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. Through two phone conversations with HHS officials and some emails, we have urged them to quickly and clearly answer the following questions:
We are very concerned with the risks involved with the IoM contract. We are also very concerned with the lack of HHS communication that triggered the uproar and fear patients naturally have based on past actions. Our next action and statement on the matter will be after the HHS puts the answers to our questions out to the public and after the IoM selects the intended committee members for the study. See our position on what the goals of any ME/CFS definition should be.See our nominations to the committee and why we made these nominations.
- Can the IoM contract be canceled? If not, why not?
- Can the HHS, and all associated agencies, endorse the 2003 Canadian Consensus Criteria based on the recommendations of the ME/CFS experts, patients and because the International Association of CFS/ME endorses it? If not, why not?
- Why did you not follow the CFSAC recommendation to host a workshop and consult with CFSAC and include experts, but instead independently went to the IoM to do a study?
- Considering the IoM used a broad term of "chronic multi-symptom illness," defined Gulf War illness by just two symptoms in their treatment report and did not have enough Gulf War illness experts in the current committee looking to define the disease, what guaranteed can you give that they won't come back with something more broad, and thus more harmful, than Fukuda?
- Does the IoM contract specifically require the IoM to use ME/CFS experts as committee members?
- Does the contract require the IoM to include a patient as a committee member?
The next CFSAC meeting will be on December 10-11 through a webinar. Learn more about how to participate here. The IoM contract is one of the topics included.
Yes, Justin. I see that now. This is a current newsletter by PANDORA.@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.
This led us to discovering that the HHS has not clearly communicated to patients, Chronic Fatigue Syndrome Advisory Committee members and ME/CFS experts. The result has been 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.
This better be good!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 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.
(my bold)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 CDCwithout additional scientific study or review.could be adopted
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.""
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?I think that if from the day that the letter of the 35 went out, we as a community all of us, each organization and patient would have stood by the 35 as a united front and completely boycotted this contract or anything to do with it, they could not have gone forward. How could they have a panel without one ME expert on there? It would never stand. No one would have shown up for any meeting and without any stakeholders' input they would have had to give up.
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.
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