Article: The Phoenix Rising Board Letter to CDC CFS Research Chief Unger

Article: Phoenix Rising: Letter to Dr. Unger

You can view the page at http://forums.phoenixrising.me/content.php?412-Phoenix-Rising-Letter-to-Dr.-Unger

 

Dear Cort, the type on your front page articles seems to be teeny tiny lately. I have to blow it up many times to read the articles. Could you please use bigger type?
Thanks,
Forebearance

Sorry about that I don't know why that is...but will try and find out.

 

@MishMash

I also note that a focus on women and pain has crept into the language PR (board) is using, at the same time as the CAA has decided to focus their attention on these issues. This contributes to suggestions of alignment of agendas between the PR (board) and CAA, which may not be in the interests of forum members. It is a pity that such agendas are not fully discussed in an open manner.

The focus on women's issue was indeed prompted by the CAA's Campaign to End Pain in Women but not in the way you think. While I was researching funding for ME/CFS I just happened to check out the funding for the women's disorders that were linked in that campaign (plus FM). I was simply astonished at what I found; fibroymalgia whieh effects more people than ME/CFS actually receives less funding person that CFS does and this was typical of these disorders( interstitial cytisus, vulvodynia, chronic inflammatory pelvic pain, etc.) several of which effect millions of women.

This suggests to me that these types of disorders are the last kind of invisible and ignored women's disorders in the medical research field and they provide the opportunity to build a strong constituency to push for more funding for everybody.

Lastly, it's just a glaring fact that 75% of the peoiple with ME/CFS are women and yet there has been almost no research to attempt to determine why this is. We know that women also dominate autoimmune disorders which suggests that uncovering the cause of the gender imbalance in CFS could very well open the door to a greater understanding the immune problems in CFS and might even ultimately result in ME/CFS being understood to be an autoimmune disorder.

You can choose from this whichever interpretation you wish; an attempt to merge agendas or simply a recognition that this is a fruitful arena not only for advocacy but also for research.

(PR, by the way has never discussed 'agendas' of any sort with the CAA or other organizations; which honestly, I think is unfortunately; if we all worked together in concert I think we could get alot more done. (That will start to happen with the Coalition4ME/CFS).

 

Most of the issues in PR's letter have been discussed a lot by me, you and others on the forum, so I'm not going to waste your time going over all of my opinions again. You're not going to get totally off the hook, though. : )

I will note that PR's request that CDC deal with CAA would probably only be supported by a small minority of pwME on PR, judging from the polls and comments of people on PR re CAA.

Requesting that CDC consider CCC and come up with it's own new definition, rather than just asking CDC to adopt CCC is just an invitation for them to delay and then introduce a new unsatisfactory definition. Let's just keep it simple and demand Reeves be dropped and CCC be added.

I would of course, use more demanding language. The time for politely asking not to be abused is long gone. They will never stop abusing us unless we raise our voices and demand justice and equity.

I understand that these are the views of PR's board, not an attempt to represent the PR 'community.' This fact should be highlighted in any communication you have with other 'stakeholders' like the government.

I signed PANDORA's letter even though I had some minor differences with it. As far as I remember, you were calling for 'unity' among pwME in response to people, such as me, strongly criticizing CAA. In light of the fact that PR is, in this instance, not willing to act in 'unity' (sign the joint letter to Unger) because of relatively minor disagreement, it seems to me that you are/were really just condemning people for their disagreement with CAA, not for their lack of 'unity.' At least that's how it comes off to me.

 

Lastly, it's just a glaring fact that 75% of the peoiple with ME/CFS are women

I am sorry, Cort. Your premise is based on this information. It is not established. And if it is indeed wrong, as recent research indicates, then it is misleading, adding to the large number of myths associated with me/cfs. It does appear that more women than men have fibro, however.

[It is ironic that so much emphasis is put on this figure, from poor studies in this area, and it is never questioned, yet one of the best designed studies ever in the history of me/cfs - the original Lombardi XMRV study - is treated with suspicion.]

Furthermore, the CAA's emphasis on women and pain is not about me/cfs, but diverts attention away from the major issues of me/cfs, so is potentially harmful. Research on pain means more of the same old concentration on non-biological causes.

How easy would it be for the CDC to mount a large campaign on pain management, along similar lines to CBT and PACE, even link in with fatigue? The money is there, the will is there, and the support from the me/cfs community, it appears, in the form of PR and the CAA is there.

There is no doubt that the CAA has shifted its focus towards women and pain because there are funds available in that area. So not so much altruism for the cause after all.

So you dramatically inflate the ratio of the gender split in me/cfs (even the CDC only talks about 60:40, and their figures are old and based on very shaky research), and you omit to mention the funding opportunity.

Also, I am at a loss to understand how four people could sit down for hours to put together an important letter and not come to the realization that their views may not represent the forum membership, nor should they represent the forum. What sort of mind set is involved in this sort of thinking?

OK, you came out and said you made a mistake, but that doesn't explain how you got to that point in the first place. This is a serious error of judgement that overshadows the administration of the forum. It is the sort of behavior that invites suspicion and criticism at every step. In light of the many criticisms directed at the board over the last twelve months from intelligent and discerning people, irrespective of their divisions, you have done your forum members a grave injustice.

 

Most of the issues in PR's letter have been discussed a lot by me, you and others on the forum, so I'm not going to waste your time going over all of my opinions again. You're not going to get totally off the hook, though. : )

I will note that PR's request that CDC deal with CAA would probably only be supported by a small minority of pwME on PR, judging from the polls and comments of people on PR re CAA.

Requesting that CDC consider CCC and come up with it's own new definition, rather than just asking CDC to adopt CCC is just an invitation for them to delay and then introduce a new unsatisfactory definition. Let's just keep it simple and demand Reeves be dropped and CCC be added.

I signed PANDORA's letter even though I had some minor differences with it. As far as I remember, you were calling for 'unity' among pwME in response to people, such as me, strongly criticizing CAA. In light of the fact that PR is, in this instance, not willing to act in 'unity' (sign the joint letter to Unger) because of relatively minor disagreement, it seems to me that you are/were really just condemning people for their disagreement with CAA, not for their lack of 'unity.' At least that's how it comes off to me.

Justin, please reread my comments; the CCC is NOT a research definition so asking the CDC to adopt it for their research studies, as appealing as that sounds, simply wouldn't work.

I honestly have no idea what you are talking about regarding the CAA and the Unger letter. This letter was about the CDC and hardly mentioned the CAA except to request that the CDC consult with WPI. CAA and IACFS/ME researchers, which is basically everyone in the field. If you feel the CDC should not collaborate with CAA funded researchers such as Dr. Light, Dr. Broderick and Dr. Glazer - then we have a very different opinion on that.

The PR board chose not to sign the Unger letter, I, on the other hand, signed it...

 

I am sorry, Cort. Your premise is based on this information. It is not established. And if it is indeed wrong, as recent research indicates, then it is misleading, adding to the large number of myths associated with me/cfs. It does appear that more women than men have fibro, however.

[It is ironic that so much emphasis is put on this figure, from poor studies in this area, and it is never questioned, yet one of the best designed studies ever in the history of me/cfs - the original Lombardi XMRV study - is treated with suspicion.]

Furthermore, the CAA's emphasis on women and pain is not about me/cfs, but diverts attention away from the major issues of me/cfs, so is potentially harmful. Research on pain means more of the same old concentration on non-biological causes.

How easy would it be for the CDC to mount a large campaign on pain management, along similar lines to CBT and PACE, even link in with fatigue? The money is there, the will is there, and the support from the me/cfs community, it appears, in the form of PR and the CAA is there.

There is no doubt that the CAA has shifted its focus towards women and pain because there are funds available in that area. So not so much altruism for the cause after all.

So you dramatically inflate the ratio of the gender split in me/cfs (even the CDC only talks about 60:40, and their figures are old and based on very shaky research), and you omit to mention the funding opportunity.

Also, I am at a loss to understand how four people could sit down for hours to put together an important letter and not come to the realization that their views may not represent the forum membership, nor should they represent the forum. What sort of mind set is involved in this sort of thinking?

OK, you came out and said you made a mistake, but that doesn't explain how you got to that point in the first place. This is a serious error of judgement that overshadows the administration of the forum. It is the sort of behavior that invites suspicion and criticism at every step. In light of the many criticisms directed at the board over the last twelve months from intelligent and discerning people, irrespective of their divisions, you have done your forum members a grave injustice.

Rusty can you provide some information somewhere that states that women do not predominate in CFS? Except for a few small studies I have never seen anything that suggests that that is not so.

I actually don't think the CAA has shifted their attention to women; there was one event about nine months ago and that was it. I do think its a good way to draw more money into this illness for reasons I have stated.

I disagree that research on pain means non-biological research and suggest you check out the Lights work on pain and others if you are concerned about that. For one thing the field of pain medication is a huge one - basely entirely on biology and that alone will keep researchers focused on understanding the biology of pain.

I'm at loss that you don't support anything in that letter (could it really be all that bad??? increased research, more collaboration with researchers, no more evidence based CFS toolkits, treatment sections created in collaboration with prominent ME/CFS physicians.....???? )

Again, the letter did not purport to support your views of the Phoenix RIsing Forums. It was the view of the PR Board. How did we get to that point? We sat down and wrote the letter and no, you have not been misrepresented because the letter will state that the letter is the view of the Board and not the Forums.

 

I disagree that research on pain means non-biological research and suggest you check out the Lights work on pain and others if you are concerned about that. For one thing the field of pain medication is a huge one - basely entirely on biology and that alone will keep researchers focused on understanding the biology of pain.

The field of pain medication is not based entirely on the biology of pain. I have been to a few different pain management programs and the use of CBT and GET is very much in the forefront of their research and treatment. I'm afraid mixing ME/CHF into that mess would be the crushing blow that dissolves ME forever.

PwME/CHF can benefit from pain research for symptom relief, but the cause of ME will never be found that way. We need research money for ME as a distinct disease.

 

Cort, I've read your letter to Dr. Unger from the board of PR, and I think it's well stated. (Agree that the word mysterious is a poor choice in this context.)

Think everyone makes good points, and hope they'll consider writing their own letter to Dr. Unger.

My final thought is that the CDC is a Federal agency and I don't think any letters will have as much impact as we might hope. Dr. Unger is a civil servant, and while the CDC is supposedly serving us civilians...My experience with Federal agencies is that their agenda is rarely easily understood or sensible. The words "Government intelligence" is an oxymoron.

Center for Disease Control. What diseases are they controlling, and how? We don't trust the CDC because they're not trustworthy.

Good letter, and I would add good luck. I'll sincerely look forward to hearing what sort of response it gets.

 

Bravo to Cort and the Board of Directors! My (wish it could be more) donation is on its way.