PANDORA meeting with CDC

[Nielk]

see below:



CDC Agrees to a Meeting
On Tuesday, February 15 at 11:59 p.m., PANDORA will be discontinuing the petition to the CDC because we have received a commitment to one of the goals.

Subsequent to the January 3 letter, signed by PANDORA and ten other patient organizations and other patient advocates, Dr. Elizabeth Unger with the CDC contacted PANDORA asking for a meeting to discuss how to develop future dialogue with patient organizations.

She said she wants to establish venues to restore trust and will discuss the nine action points listed in the letter and petition.

She agreed to a phone conference including representatives from other patient organizations that joined in this effort. This is expected to be in March, but we do not yet know exactly when.

Thank you for participating. This is a first step.

One Voice, as One Community, with One Cause.

 

[Merry]

Good news. Thanks, Nielk.

 

[Chris]

Thanks, Nielk, and good for all you guys at PANDORA! Best, Chris

 

[Nielk]

I wonder if one of the nine poits mentioned in the letter was to fight for a name change?

 

[CBS]

Letter to CDC from PANDORA

Here's a link to an overview of the project and the main points of the letter: http://www.change.org/petitions/tel...rineimmu_disorders_org_for_resech_amp_adv_inc

Patients could add their names to endorse the primary points and include additional comments if they wished to do so.

Urge Dr. Elizabeth Unger to Change CDC Research of ME/CFS
Greetings,
On Dec. 6, PANDORA and ten other ME/CFS patient organizations sent a letter to newly-appointed CDC chief of the Viral Diseases Branch, Dr. Elizabeth Unger. I urge you to direct her to implement the following changes to the way that agency conducts ME/CFS research:

1) Accept the invitation from patient organizations to an open dialogue through quarterly meetings, where they can inform you of how CDC policies affect patients and their quality of life, and where you can educate the patient community on the reasons for decisions made by the CDC in relation to this disease. PANDORAs 2009 response to the CDCs request for input to the 5-year Strategic Plan, as shown on their website, is a good starting point for discussions.
2) Establish monthly conference calls with a panel of other ME/CFS researchers, such as those who are members of the International Association for CFS/ME, for the purpose of creating collaborations.
3) Change the diagnostic criteria for ME/CFS so they more accurately reflect the NeuroEndocrineImmune disorder discovered in the Incline Village and Lyndonville outbreaks. Study that illness. The CDC should use the increasingly more popular and scientifically well-received Canadian Case Definition for its current and planned 5-year strategy.
4) For cohorts, use patients from well-known physicians who specialize in caring for ME/CFS patients and have done so for decades. As research history shows, finding the common denominator of an emerging illness requires the cohort criteria be narrow. AIDS is a great example of this. In-hospital studies are best conducted in facilities trained and dedicated to the treatment of ME/CFS patients.
5) Use your influence and resources to support the Chronic Fatigue Syndrome Advisory Committee recommendation that the federal government establish and coordinate a network of specialized care / research centers. This is the principle behind the NeuroEndocrineImmune Center promoted by PANDORA and recommended by the New Jersey Legislature.
6) Change the name of the illness to one that reflects the serious and debilitating reality that many patients experience. Correcting the misconceptions caused by the trivializing name, chronic fatigue syndrome, rests with the CDC because that is where the current name originated. Invite input from patient organizations, leading ME/CFS researchers, and recognized ME/CFS clinicians in choosing a new name that reflects the pathology and not just one symptom.
7) Establish a proactive physician education program through seminars and curriculum in medical schools, showing the biological findings in the majority of patients with this illness. Provide current evidence-based information on diagnosis and management of ME/CFS to health care providers, persons with ME/CFS, caregivers, and evaluate associated outcomes.
8) Request that Congress allocate more research funding for ME/CFS to bring it in line with funding levels of other disabling diseases.
9) Abandon the psychological research (such as the childhood trauma study) and, instead, study the possible connections to infections in ME/CFS. This is certainly much more appropriate for your branch, the Chronic Viral Diseases Branch.

You have the power to repair, restore, resolve and get it right.
[Your name]

 

[WillowJ]

good work!

 

[WillowJ]

Please insist they remove the ICD-10-CM listing for CFS, NOC (not otherwise classified) under ill-defined symptoms and use only the CFS listing with ME and post-viral fatigue syndrome under neurological diseases.

 

[taniaaust1]

That's an awesome achievement. A huge step on the right direction

 

[eric_s]

Yes, very good. Thanks and keep it up. The more communication between ME/CFS groups and institutions like the CDC, NIH etc. the better. I just donated 10$ to Pandora, not much, but i'm sure it helps.

 

[Nielk]

Here's a link to an overview of the project and the main points of the letter: http://www.change.org/petitions/tel...rineimmu_disorders_org_for_resech_amp_adv_inc

Patients could add their names to endorse the primary points and include additional comments if they wished to do so.

Thanks much CBS.

I see #6 tackles the issue of name change. Maybe here is our opportunity to give our input as to what name to change it to.

What about CNEID: Chronic NeuroEndocrineImmune Disorder?

Does anyone else have a different name in mind.

If we can all agree on an acceptable name, we can send it to Marly Silverman because she is meeting up with the CDC
Sometime in March.

 

[garcia]

Thanks much CBS.

I see #6 tackles the issue of name change. Maybe here is our opportunity to give our input as to what name to change it to.

What about CNEID: Chronic NeuroEndocrineImmune Disorder?

Does anyone else have a different name in mind.

If we can all agree on an acceptable name, we can send it to Marly Silverman because she is meeting up with the CDC
Sometime in March.

Personally I would get rid of the word "Chronic". "Chronic" is often seen as a euphemism for "trivial", i.e. not acute, not serious, not worthy of attention.

And what matters more than the name is the case definition that will be used to back up the name.

 

[RivkaRivka]

i'm very excited to read about this meeting with the cdc. thank you for organizing this effort.

this meeting happening at more or less the same time as the CDC protest in atlanta? all i can say is, "perfect!!!" going at it from two different angles -- the calm meeting angle and the impatient and loud protest angle -- both at the same time, yes!, that is just what is needed.

sickie in bed,
rivka

 

[WillowJ]

Personally I would get rid of the word "Chronic". "Chronic" is often seen as a euphemism for "trivial", i.e. not acute, not serious, not worthy of attention.

And what matters more than the name is the case definition that will be used to back up the name.

I'm with you, garcia

 

[usedtobeperkytina]

Here is a survey

In case you miss it in another thread, here is a link to a survey. We want to hear what patients want: http://survey.constantcontact.com/survey/a07e3f2r0fagk8q0b3y/start

Just a reminder, Dr. Unger is not in the CDC department that is doing XMRV research. But some of the things in the list, like changing the criteria and working with other researchers, might have an impact on their XMRV research.

You may remember that the last study done by Bill Switzer at the CDC was in a totally different department. It is in the department that does retrovirus research.

Tina

 

[Nina]

In case you miss it in another thread, here is a link to a survey. We want to hear what patients want: http://survey.constantcontact.com/survey/a07e3f2r0fagk8q0b3y/start

Just a reminder, Dr. Unger is not in the CDC department that is doing XMRV research. But some of the things in the list, like changing the criteria and working with other researchers, might have an impact on their XMRV research.

You may remember that the last study done by Bill Switzer at the CDC was in a totally different department. It is in the department that does retrovirus research.

Tina

I should like to think that as the head of CFS research, Dr. Unger has some influence on XMRV research, even if that is conducted somewhere else at the CDC.

Tina, will PANDORA be requesting a meeting with the department for retroviral research then?

I honestly think a meeting with the CDC that excludes XMRV as a prominent topic isn't the best you can do right now.

 

[usedtobeperkytina]

Of course

of course, the letter had many points. There was no way to know if or which of the points would cause a response. The invitation came as a complete surprise.

As said, it is a first step. No idea who in CDC is invited also. Basically, PANDORA is an invited guest.

It is an opportunity to start the conversation, which is the first point.

Actually, if Unger has any peripheral role in XMRV besides providing samples for their research, this meeting might be an opportunity find this out.

What we do know she has some influence over is the criteria for who is included in the samples. You may notice, that is one of the points.

Tina

 

[justinreilly]

Personally I would get rid of the word "Chronic". "Chronic" is often seen as a euphemism for "trivial", i.e. not acute, not serious, not worthy of attention.

And what matters more than the name is the case definition that will be used to back up the name.

I agree fully. Also would favor Disease over Disorder in this example.

I think most people like ME for now, as I do, since that is the official name since 1969 and has the most use and traction. There are other long threads on the name issue, though PR's search engine leaves a lot to be desired so it may not be easy to find them. if you want to discuss this i suggest finding (or starting) another thread. I do think that a specific name should be asked for at the meeting. asking them to look into it or something like that will just result in them dragging their feet as usual.

I think ICD 10 CM should be addressed as one of the top 3 topics.

If they can't agree on CCC, the least they MUST do NOW is ditch Reeves def. and declare it invalid. this is isssue #1 for me.

Thanks to PANDORA for soliciting patient input.

 

[jace]

Our disease should be called ME and ME/CFS when there are issues of understanding. The criteria should be the Canadian Consensus definition.

Of course, in the future, research may come up with answers re causation, and at that point the definition and the name will change. Until that time, why re-invent the wheel?

 

[Mark]

@Justin: Tip: If struggling with PR's search engine (eg for short searches like 'ME' or 'CDC' which are too short for it), try using google. Add "site:forums.aboutmecfs.org" to your google query and you end up with a full google search of PR. Much better

jace: There's very broad agreement on demanding the use of the CCC for research purposes, but for diagnostic purposes there are lots of problems with that, and we are working on a formulation that would allow everyone to support such a call. In particular, if you are proposing to remove the diagnostic label from millions of sick people, you have to also say something about what you are suggesting for those people instead - and don't expect them to support it if your answer is "I don't care, throw them to the psychs": many or most of those people are physically ill too, whether with ME or something else (even if there are people with simply depression mixed in as well...and assuming you don't think that depression has physical causes too...). And note that some of those people may currently be in partial remission from some symptoms in the CCC, or may not yet have developed them all - our top doctors all agree that these patterns exist and need to be provided for. And also note that the authorities, if they accept that proposal regarding using the CCC as diagnostic criteria, would then use it to deny benefits etc to anybody who doesn't fit the definition. We've been discussing the problems on the following thread, looking for a formulation that can be wholeheartedly endorsed by all of us, so that we can all be united in campaigning on what is one of the most important issues of all, for all of us - I'd welcome your thoughts on that discussion:
http://forums.aboutmecfs.org/showth...r-community-s-differences&p=157280#post157280

 

[Nielk]

As far as name change:

Crohn's disease is named after Dr.Crohn who first studied cases in 1932 in Mt. Sinai Hospital.
Till the it was called Ileitis and they renamed it Crohn's disease after Dr. Crohn

A Dr. Ramsey studied the first outbreak of Chronic Fatigue patients in the royal Free Hospital in the mid 1950s.
How about changing the name to: Ramsey's Disease?

What do you guys think?