CFIDS Association asking expert signatories about their current position on endorsing the CCC

[Nielk]

The process of study by the Institute of medicine:

The IOM applies the National Academies’ rigorous research process, aimed at providing objective and straightforward answers to difficult questions of national importance. Our consensus studies are conducted by committees carefully composed to ensure the requisite expertise and to avoid conflicts of interest.
The committee’s task is developed in collaboration with the study’s sponsor, which may be a government agency, a foundation, or an independent organization. However, once the statement of task and budget are finalized, the committee works independently to come to consensus on the questions raised. In fact, while committees may gather information from many sources in public meetings, they carry out their deliberations in private in order to avoid any external influence.

 

[Esther12]

Ecoclimber with the contract having now been awarded, what action would you advocate then?

The patient community could continue with their preferred course - my assumption - expressed by the '35' i.e. the CCC and nothing else (although the CCC will need to be operationalised). And it could do so via engagement with the IOM.

Or it could seek to influence the IOM into appointing those to the panel it would most like to see there e.g. perhaps those who contributed to the CCC and/or ICC.

My point is that now we surely need to get over our distaste: and move onto the next stage. What would you suggest we do next as a positive course of action? We can't hope to hold back the tide.

I think that I might be quite detached from the patient community, but i have no particular preference for the CCC, or great respect for, other than a very few, supposed me/CFS experts. I just want less quackery to be inflicted on me. Currently the range of varying cfs criteria is a helpful reminder to people of how little value a CFS diagnosis is. If we have some 'expert panel' coming up with some new equivalent to 'chronic multi symptom disorder', and pretending that this is a complex, multifaceted illness which needs careful management from a specialist multidisciplinary team, then it will make it even easier for quacks to inflict themselves upon patients. Expert panels rarely conclude 'we have no idea what we're talking about, so we'll just leave people alone', but that's what any respectable investigation into cfs would decide.

Even if we did not have the worrying sign from their gulf war investigation, I would struggle to see how this new 'expert' panel could do anything but harm patients.

 

[Bob]

I have no idea where people seems to think that we can pressure them as to who to pick.

The SoW statement does say that the committee with seek nominations, but gives no indication about the process.

National Academies Umbrella Contract
Statement of Work/Request for Proposal
Draft Timeline
> Action
>> Seek committee nominations ...

https://dl.dropboxusercontent.com/u/57025850/MECFS IOM SOW.pdf

 

[Ecoclimber]

https://www.facebook.com/notes/pand...pandora-orgs-email-to-experts/684973141522553

As most of you know, our organization supports what the majority of ME/CFS experts recommend in matters of scientific process, including developing a good definition for the disease.

Starting with the 2003 CCC, we believe it’s time for ME/CFS clinical and research definitions that change the name, include subgroups, include biomarkers and a way to designate with severe functional limitations.

Developing a consensus or this to happen, more action is needed than just publishing proposals in the medical literature.

Starting on September 30, we have been sending emails to the 35 signatories asking what next step they have planned and to offer our assistance to them. This is the wording of this email we are sending to them:

Dear Dr. _______,

As the president of PANDORA Org, we are very concerned with all that has transpired in recent weeks concerning the ME/CFS definition. A quick summary:

• An announcement was made of an intended contract between Dept. of Health and Human Services Office of Women’s Health and the Institutes of Health to conduct a workshop that will lead to a consensus among the medical professional community at large on an ME/CFS definition.
• Many patient advocates started a campaigned to stop that contract fearing the intent was to develop a new definition without the input of ME/CFS experts.
• You and 34 other ME/CFS experts signed a letter urging the IOM contract be canceled and all HHS departments endorse and use the 2003 Canadian Consensus Criteria.
• Hours after that letter was put out to the public, the Chronic Fatigue Syndrome Advisory Committee gave more details on the IOM contract that they said was in response to the patients. (see this:http://www.occupycfs.com/2013/09/23/contract-signed/)
• Based on the letter you signed, many patients continue to campaign to the HHS to cancel the IOM contract.

We are pleased to see you and others assert your position as an ME/CFS expert.

Although we know not all ME/CFS experts signed this letter, we want to support the scientific and medical judgment of the majority of our experts.

As all these matters transpired, we were talking to many involved parties to gain insight.

We then published our position statement: http://bit.ly/1barAPX In that position statement, we mention that some leadership or other action is required to form a consensus on a disease definition beyond just our ME/CFS experts.

We also point out that scientific process has revealed more about ME/CFS so that a definition with biomarkers and subgroups is possible and needed and a new name for the disease is needed.

We have spoken to two IACFS/ME board members who tell us they do not have the funds, manpower or time to put together a workshop or other mechanism to create the updated definition and get it widely accepted among medical professionals and do away with the “CFS” moniker.

Because you and the 34 others have spoken as scientific leaders on ME/CFS, we offer our support to what you as a group plan as a next step to create the needed progress. What next step do you have planned? Are you considering a workshop?


Most Kindly,
Lori Chapo-Kroger, RN
President & CEO
PANDORA Org
http://pandoraorg.net

*****************************************************************************************************************************
LETTER TO DR. BATEMAN

http://www.mecfsforums.com/wiki/CFI..._Signers_of_Open_Letter_to_Secretary_Sebelius

The CFIDS Association of America Leveraging patient-centered research to cure ME/CFS

Dear Cindy,

As the IOM clinical case definition discussion continues, the CFIDS Association takes every response and each call to action extremely seriously. We do not make any of these decisions as a person or a staff, but as an Association that seeksto advocate for the ME/CFS community and draw on the expertise of many. We have been contacted by members of congress for information on how they should respond to theirconstituents. Yesterday we were contacted by a journalist reporting for the pharmaceutical industry for our reaction to the letter to the Secretary calling for the IOM contract to be abandoned.

On Monday, after weighing all input, putting this in the context of the FDA meeting and the need for definition and regulatory guidance to industry, we released a statement in support of the IOM contract specifying how we thought it would be most effective.

Read it HERE.

Later that same day we received word that the contract had been awarded, work would proceed with IOM and that all of the concerns advocates had raised were addressed in the terms.

Read the announcement HERE.

Within an hour of that announcement, the letter opposing the contract came out with your signatures.

I spoke to Cindy Bateman to try to understand the letter and the controversy. Cindy explained that the letter writing effort started a few weeks ago when there was little information and early skepticism about the IOM contract. However, Cindy now believes that the IOM effort as described more comprehensively in the Monday announcement is a positive course of action. She suggested contacting those of you who signed the letter and see how you feel now as well.

It is important that the Association make every attempt to bring clarity to this issue with a strong voice, defining the best course of action, framed in the most reasonable tone that is influenced by leaders in the field such as you. That is why I am reaching out to you today.

The CFIDS Association wants to weigh all of your input and help bridge communication between our community, the agencies and the media. Given this additional information we have regarding the IOM contract, can you tell us-either on or off the record-where you stand by the terms in the letter? Do you still want the IOM contract to be abandned and the CCC to be adopted as the official definition? If you have any misgivings about the timing or content the letter, or feel the IOM contract should proceed as now outlined, we need to hear from you. We will completely respect anyone that wants to remain off the record, but we must give the patients-all patients-the guidance and proper information they so desperately need.

Please consider sharing your response with Leigh Reynolds, our engagement manager, who is working on the next wave of our communication on this important issue. She can be reached at XXX-XXX-XXXX or by email at XXXXX@CFIDS.org.If you are willing to go on record, that would be fantastic. If you would rather remain anonymous in your response, we will absolutely respect that and would never betray that trust. Either way, we look forward to hearing from you with all feedback at your earliest convenience-if at all possible, by noon tomorrow (Friday, September 27th.)

Suzanne D. Vernon, PhD Scientific Director The CFIDS Association of America
Working to make ME/CFS widely understood, diagnosable, curable & preventable"
I alone cannot change the world, but I can cast a stone across the waters to create many ripples." -Mother Teresa

 

[JohnnyD]

After the last few years of advancement in legitimizing this illness among the scientific community, CAA actions is so irresponsible because it places the patient population at risk once again in being marginalized by the medical profession. Their actions are reprehensible.

Eco

Could not agree more. In fact, I'd say their actions are criminal.

@firestorm. Lots to advocate for, a few things come immediately to mind:
1.) Dissolution of the CAA
2.) Cancellation if the IOM contract.
3.) 1 million in contract money re-allocated to Ian Lipkin for continuation of his research (a flight of fantasy I know)

I'd list the adoption of CCC, but the experts (as far as I can see) have adopted CCC. Done deal.

 

[Nielk]

The letter from CAA to the 35 is here

Dear Cindy,

As the IOM clinical case definition discussion continues, the CFIDS Association takes
every response and each call to action extremely seriously. We do not make any of
these decisions as a person or a staff, but as an Association that seeks to advocate for
the ME/CFS community and draw on the expertise of many. We have been contacted
by members of congress for information on how they should respond to their
constituents. Yesterday we were contacted by a journalist reporting for the
pharmaceutical industry for our reaction to the letter to the Secretary calling for the IOM
contract to be abandoned.

On Monday, after weighing all input, putting this in the context of the FDA meeting and the
need for definition and regulatory guidance to industry, we released a statement in support
of the IOM contract specifying how we thought it would be most effective. Read it HERE.
Later that same day we received word that the contract had been awarded, work would
proceed with IOM and that all of the concerns advocates had raised were addressed in
the terms. Read the announcement HERE.
Within an hour of that announcement, the letter opposing the contract came out with
your signatures.

I spoke to Cindy Bateman to try to understand the letter and the controversy. Cindy
explained that the letter writing effort started a few weeks ago when there was little
information and early skepticism about the IOM contract. However, Cindy now believes
that the IOM effort as described more comprehensively in the Monday announcement is
a positive course of action. She suggested contacting those of you who signed the letter
and see how you feel now as well.

It is important that the Association make every attempt to bring clarity to this issue with
a strong voice, defining the best course of action, framed in the most reasonable tone
that is influenced by leaders in the field such as you. That is why I am reaching out to
you today.

The CFIDS Association wants to weigh all of your input and help bridge communication
between our community, the agencies and the media. Given this additional information
we have regarding the IOM contract, can you tell us - either on or off the record - where
you stand by the terms in the letter? Do you still want the IOM contract to be abandoned
and the CCC to be adopted as the official definition? If you have any misgivings about
the timing or content the letter, or feel the IOM contract should proceed as now outlined,
we need to hear from you. We will completely respect anyone that wants to remain off
the record, but we must give the patients - all patients - the guidance and proper
information they so desperately need.

Please consider sharing your response with Leigh Reynolds, our engagement manager,
who is working on the next wave of our communication on this important issue. She can
be reached at 816-863-5577 or by email at LAReynolds@CFIDS.org. If you are willing to
go on record, that would be fantastic. If you would rather remain anonymous in your
response, we will absolutely respect that and would never betray that trust. Either way,
we look forward to hearing from you with all feedback at your earliest convenience - if at
all possible, by noon tomorrow (Friday, September 27th.)

Suzanne D. Vernon, PhD
Scientific Director
The CFIDS Association of America
Working to make ME/CFS widely understood, diagnosable, curable & preventable

 

[readyforlife]

I's sure the fact that Dr. Lucinda Bateman is on the scientific advisory board of the CAA has nothing to do with the fact that after CAA called her she retracted her position.

This is really strange that the only doctor they quote or mention by name is Dr. Lucinda Bateman. If they had any other researchers or doctors agreeing with them they would have proudly mentioned their names. The only one so far is someone that is on their scientific advisory board....wow.

My brain is really fried over this whole mess. I'm trying to grasp what this all means, so will researchers be denied funding until they come up with a definition in 18 months? What will this mean for our community for the next 18 months will it stop or slow any research progress?

So in 18 months a definition is made then what? I'm confused.

 

[Esther12]

Has the initial CAA letter been put on-line somewhere?

 

[readyforlife]

Has the initial CAA letter been put on-line somewhere?

http://www.research1st.com/cfs-blog/

 

[Esther12]

http://www.research1st.com/cfs-blog/

Actually, I couldn't see it there. Am I being stupid?

Also, I have just seen that the gulf war comittee had been told to come up for criteria for 'Chronic Multisymptom Illness', rather than deciding for themselves that this was the best approach to the problems faced by Gulf War vets. They did still go along with it, and part of their brief was the evaluation of terminology, etc, in this area, but it's still marginally less bad than I had though.

 

[Ecoclimber]

Actually, I couldn't see it there. Am I being stupid?

Also, I have just seen that the gulf war comittee had been told to come up for criteria for 'Chronic Multisymptom Illness', rather than deciding for themselves that this was the best approach to the problems faced by Gulf War vets. They did still go along with it, and part of their brief was the evaluation of terminology, etc, in this area, but it's still marginally less bad than I had though.

Have you read the history behind the IOM VA redefintion of GWS to CMI and the change in treatment options for patients?
Gulf War illness advocates skeptical of institute panel

 

[jspotila]

I's sure the fact that Dr. Lucinda Bateman is on the scientific advisory board of the CAA has nothing to do with the fact that after CAA called her she retracted her position.

I had the good fortune to serve with Cindy on the Association's Board of Directors for several years. I observed her interactions with people on monthly conference calls and at more than one in-person meeting. And I attended at least one in-person meeting with her after she left the Board. I also co-authored with her a letter to the American Academy of Family Practitioners after they published that dreadful article they published last year. Cindy is a calm, compassionate, thoughtful person, and she is no pushover. She has tremendous integrity, and defends her positions on things quite readily.

 

[Esther12]

Have you read the history behind the IOM VA redefintion of GWS to CMI and the change in treatment options for patients?
Gulf War illness advocates skeptical of institute panel

I had read that article before. It's not an area I know much about though.

 

[Forbin]

So, given the history of expert government panels formed to deal with CFS, I guess my question would be...

How many of the IOM experts tasked with creating a new clinical definition of ME/CFS can we expect to be... dentists?

 

[alex3619]

Just as important as the composition of the group is what they are told to do. I think the GWS issue shows this clearly. If the terms of the contract stipulate something predetermined, then that is what we get. Like a name change. Or conflating ME with CFS. No option for other alternatives will exist under the contract.

 

[Nielk]

The letter from CAA to the 35 is here

Dear Cindy,

As the IOM clinical case definition discussion continues, the CFIDS Association takes
every response and each call to action extremely seriously. We do not make any of
these decisions as a person or a staff, but as an Association that seeks to advocate for
the ME/CFS community and draw on the expertise of many.

Translation: unlike individual patients,unlike patient advocates and unlike clinicians and researchers, we take action extremely seriously.

We have been contacted by members of congress for information on how they should respond to their
constituents. Yesterday we were contacted by a journalist reporting for the
pharmaceutical industry for our reaction to the letter to the Secretary calling for the IOM
contract to be abandoned.

Translation: we are very powerful - the world revolves around us

On Monday, after weighing all input, putting this in the context of the FDA meeting and the
need for definition and regulatory guidance to industry, we released a statement in support
of the IOM contract specifying how we thought it would be most effective. Read it HERE.

Translation: even though we recommend the CCC, we don't

Later that same day we received word that the contract had been awarded, work would
proceed with IOM and that all of the concerns advocates had raised were addressed in
the terms. Read the announcement HERE.

Translation: we are the only ones who are capable to make this important judgement that all the concerns were addressed

Within an hour of that announcement, the letter opposing the contract came out with
your signatures.


I spoke to Cindy Bateman to try to understand the letter and the controversy. Cindy
explained that the letter writing effort started a few weeks ago when there was little
information and early skepticism about the IOM contract. However, Cindy now believes
that the IOM effort as described more comprehensively in the Monday announcement is
a positive course of action. She suggested contacting those of you who signed the letter
and see how you feel now as well.

Translation: so the letter of opposition came after the announcement and was sent out never the less

It is important that the Association make every attempt to bring clarity to this issue with
a strong voice, defining the best course of action, framed in the most reasonable tone
that is influenced by leaders in the field such as you. That is why I am reaching out to
you today.

Translation: we need you to agree with us, in order to speak with one strong voice

The CFIDS Association wants to weigh all of your input and help bridge communication
between our community, the agencies and the media.

Translation: "bridge communication" = come over to our side

Given this additional information we have regarding the IOM contract, can you tell us - either on or off the record - where you stand by the terms in the letter? Do you still want the IOM contract to be abandoned and the CCC to be adopted as the official definition?

Translation: the letter was sent out after the HHS announcement but please reconsider


If you have any misgivings aboutthe timing or content the letter, or feel the IOM contract should proceed as now outlined,we need to hear from you. We will completely respect anyone that wants to remain off
the record, but we must give the patients - all patients - the guidance and proper
information they so desperately need.

Translation: we are only doing this for these "desperate" patients - they need guidance

Please consider sharing your response with Leigh Reynolds, our engagement manager,
who is working on the next wave of our communication on this important issue. She can
be reached at 816-863-5577 or by email at LAReynolds@CFIDS.org. If you are willing to
go on record, that would be fantastic. If you would rather remain anonymous in your
response, we will absolutely respect that and would never betray that trust. Either way,
we look forward to hearing from you with all feedback at your earliest convenience - if at
all possible, by noon tomorrow (Friday, September 27th.)

Suzanne D. Vernon, PhD
Scientific Director
The CFIDS Association of America

Working to make ME/CFS widely understood, diagnosable, curable & preventable[/quote]

 

[Nielk]

I had the good fortune to serve with Cindy on the Association's Board of Directors for several years. I observed her interactions with people on monthly conference calls and at more than one in-person meeting. And I attended at least one in-person meeting with her after she left the Board. I also co-authored with her a letter to the American Academy of Family Practitioners after they published that dreadful article they published last year. Cindy is a calm, compassionate, thoughtful person, and she is no pushover. She has tremendous integrity, and defends her positions on things quite readily.

I am not calling Dr. Bateman's character in question. I don;t know her personally, but have heard good things about her. Those who agree with her decision would say that she has strength in character that she is standing up for what she believes is best for the patients.

From the letter provided by CAA which they sent out to the 35, they state that the first person they called was Dr. Bateman to confer with her the position of the signers. It makes sense that they called her because she does serve on their scientific advisory committee. I'm just always leery when people make such a quick 180 in their position. In my view, and I guess it's not shared by Dr. Bateman, the announcement by HHS does not satisfy my requirements for a fair due process.

To Dr. Bateman's credit, she was transparent and very forthcoming with her announcement about her actions on her webite.

 

[Bob]

I don't think we can judge people in this process, or assume to understand other people's thinking processes. It's a complex and ever changing situation. There are reasons to get involved in the process, and there are reasons to boycott it. Everyone will have different opinions about it. It's complex, and the situation is fluid.

 

[parvofighter]

A DISSENTING OPINION TO DR BATEMAN'S:

This comment is awaiting moderation on the Research1st site: http://www.research1st.com/2013/10/...ment-on-the-h-h-s-iom-contract/#comment-47015.

In the spirit of open dialogue on a topic critical to patients like me who have been ill for decades, I hope you will publish this dissenting opinion. My family has not been touched lightly by auto-inflammatory/auto-immune disease; with Behcet's Disease; Spondyloarthropathy; and Amyloidosis in my immediate relatives. And that doesn't include my viral cardiomyopathy and constellation of ME pathology that has rendered me housebound and bedbound. In other words, in the interests of full disclosure, I am indeed biased that trivializing ME and neuro-immune diseases by lumping them together with benign fatiguing illnesses can be life-threatening.

Here is my concern about Dr Bateman’s logic - Misplaced Attribution. If I understand correctly, Dr Bateman feels that little progress has been made in the past 20 years, because of insufficient funding. True, funding is a problem. BUT I was under the impression that our lack of progress is due to overly broad diagnostic criteria, which dilute research integrity; render research results meaningless; and perpetuate a misguided belief among the mainstream that ME is benign. And if ME is benign, why fund it?

The longer the neuro-immune diseases under "ME" are lumped together with deconditioning and depression (entities which already receive MASSIVE funding), the longer ME neuro-immune diseases will remain in a medical wasteland. I hate to say it, but Dr Bateman's quote below is worrisomely reminiscent of the CAA's inexplicable focus on broad CFS interpretations (ergo, which might pull in broader funding bases), which I have long believed is a short-sighted and self-serving strategy (unwitting, or otherwise) for increased funding.

Having grown up in an academic family, I am well familiar with the compromises that are sometimes made in order to secure grant money. However when the push for increased funding occurs at cross-purposes to the needs of the desperately ill patient community being researched, one does need to raise the issue of moral hazard.

I submit the scenario is that of a dragon eating its tail. As long as we allow broad, meaningless criteria to persist, we will remain in "CFS" never-never land, with no sense of medical emergency by funding bodies. PLEASE, let’s allow our funding bodies to see ME for what it is: a devastating neuro-immune disease(s) that destroys lives; and which desperately needs aggressive biomedical treatments. Continuing to look at ME disease subgroups through the rose-tinted glasses of “CFS” and other “Fatiguing illnesses” will merely perpetuate our nightmare of no treatment; no recognition; and no hope for ME.

In other words, I emphatically disagree with Dr Bateman’s assertions: “We-- the CFS community--- need an increasingly broad foundation of federal, academic and research and financial support. Our relatively small group of dedicated clinicians, researchers and patient advocates has made very slow progress in 20 years.”

After all, thousands of rare diseases are studied and funded with a healthy sense of urgency - without diluting the reality that these diseases are devastating, life-threatening, and in URGENT need of funding.

Let’s look at the ROOT CAUSE of this funding crisis in ME– it’s lack of recognition that ME diseases are NOT benign CFS.

 

[CBS]

Here is my concern about Dr Bateman’s logic - Misplaced Attribution. If I understand correctly, Dr Bateman feels that little progress has been made in the past 20 years, because of insufficient funding. True, funding is a problem. BUT I was under the impression that our lack of progress is due to overly broad diagnostic criteria, which dilute research integrity; render research results meaningless; and perpetuate a misguided belief among the mainstream that ME is benign. And if ME is benign, why fund it?

Parvo,

EXACTLY!!!

We also lack "ME/CFS" physicians with strong research backgrounds. Most are conscripts drawn into the field due to personal ties to the illness. Few of our "experts" set out to be researchers who developed an interest in CFS. They might be able to recognize a case of ME/CFS but have little training in what to do next in order to better understand the disease.

Thanks,

Shane