Poll: IOM study - for or against?

[Dreambirdie]

@Nielk Thanks for creating and posting this.

I definitely oppose the contract. I will pass the link to this poll along on FB.

 

[akrasia]

@Neilk wrote:

Opposition, is a proactive action. As a general rule, I am not a person who likes to demonstrate. I am not in opposition for the sake of being oppositional. I have looked into all this very carefully and keep on top of all the actions that are happening. I strongly oppose this study, it's chosen venue, the IoM is wrong. It's SoW is flawed and set up for failure. I question all the lies and lack of transparency. I will not join work with it, for the sake of being proactive.

Exactly. Something whose process is root and branch problematic and fretted with disingenuousness, that made @jspotila "shake with rage." that has taken place in a larger context of dismissal and contempt, is not owed an antiseptic activism of "postivity and professionalism." This is the attitude that our major advocacy organization, CAA, employed for the last quarter century and has garnered precious little, except earning more condescension and phoniness. It's a matter of self respect.

While I think well of the m.e. experts appointed to the committee, and expect them to put a brake on the process, if things go badly, I don't think the IOM process, or anything generated by the NIH, cares about patient input.

Support the letter of protest. This is a waste of money and time, and just because it's presented as a fait accompli doesn't mean we should adopt a go along get along attitude.

 

[alex3619]

I don't understand the 'bias' you are referring to, Alex. Everyone has an option to vote as they wish, anonymously. In what way is that a bias? It might be that the ones who are opposed are more committed to this topic and therefore take the time to vote. I guess this could be a flaw of any poll taken. I urge everyone who reads this, regardless of how you vote to please take the time and voice your opinion.

A response non-response bias is not about the options being biased. It is about the people responding ... those opposed to the IOM would be expected to be more motivated than those who are not. I do not intend it as @Firestormm seems to think I did. Those who are avoiding the IOM issue might therefore not vote, nor would those who know very little or nothing about the IOM issue. So those who are in the know, and who are motivated, might be predominantly those who oppose the IOM and support our experts, like me. Its something that has to be kept in mind, the people who read these threads are probably a self selecting group, and much more focused on the politics than most.

However if enough vote and the trend of over 90% continues, then I doubt its such a response non-response bias, though it might still contribute a little to the numbers.

So if the trend continues it would be fair to say that those who are concerned about scientific and political advocacy overwhelmingly oppose the IOM on PR and support our experts, but it would not be fair to say most on PR do unless we have a poll with thousands of voters and a clear trend is evident over such numbers.

PS I confused non-response bias with response bias, hence the confusion. Ooops. Sorry.
http://en.wikipedia.org/wiki/Non-response_bias

 

[alex3619]

Opposing the IOM is still a valuable position to take even if the IOM goes ahead, and even then if the outcomes turns out not so bad. The HHS has historically acted like a bully. Acquiescing every time they want something sets up a pattern and sends a message - walk all over us at will.

Our response is what they get by not acting on the CFSAC recommendation but using it as an excuse for their own action, and by not involving the CFS and ME communities but acting unilaterally. Further they selected a definitional process that is relatively new and has a built-in evidence bias in research areas like ME. In older, well-funded areas, such as treatment of asthma for example, such a process can work. In badly funded areas, where funding for large studies is skewed toward one particularly viewpoint, and where that viewpoint is mostly based on highly subjective and not objective data, an evidence based approach simply affirms bias. Only the opposition of our experts, who know better, can possibly save this process. The only other way to save it is to cancel the project.

 

[Firestormm]

Comment Removed. Posted because I am getting angry.

 

[Wally]

Nielk,

I just wanted to say that I think your idea to take a poll of Forum members opinion on the ME/CFS OMI/HHS contract is a good one. As well as the similar poll that Patricia Carter (owner of the MECFS Forum) has done on the that Forum. See, http://www.mecfsforums.com/index.php/topic,18972.msg158175.html#new.

I think it would be great if Rich Carson on ProHealth could also put up a similar poll on his site because of the amount of traffic his site also receives.

Of course each advocacy group could also do such a poll and hopefully we would get some level of transparency when an individual or a group is advocating for a particular issue that effects our patient community. Both patients and other interested parties could see where the online presence of patients may be voicing their concerns.

I like the idea of a petition a little bit better than a poll because for big issues because there is more accountability (written record) to identify individuals who support a particular position. Even if an individual chooses to publicly remain anonymous, which I believe for some people is very important, you can extrapolate some pretty useful information from a number of the options available for responses on a petition. See, Patricia Carter's petition at

https://secure.avaaz.org/en/petitio...ccept_the_CCC_definition_of_ME/?pv=4&mobile=1

and Mary Dimmock's petition at

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

While the use of petitions can dilute their usefulness if used too often or not worded well when first developed, I think if they are utilized by groups where a large community of patients congregate online it could be a great tool to hear what people feel rather than a group or individual making such representations by using the term "we" without any evidence to back up who the royal "we" might be.

I believe the two petitions mentioned above may be a historical first for this illness to see in black and white the sheer number of people in the ME/CFS community who have come together to express their opinion (if I am wrong and there have been other such advocacy efforts that have shown numbers larger than seen with these petitions, please let me know so I can modify my post).

Here is a link to a thread here on the Forum where I spoke about why I feel using a tool like a petition is important for our community leaders/advocates to consider using. See, Reply #25 on page 2 at http://forums.phoenixrising.me/inde...ll-the-iom-committee.27457/page-2#post-418734

Thanks Nielk (and Patricia) for stepping up prior to the Jan. 27th IOM meeting to bring these polls to people on both of these Forums to express their opinions.

Wally

 

[Nielk]

A response non-response bias is not about the options being biased. It is about the people responding ... those opposed to the IOM would be expected to be more motivated than those who are not. I do not intend it as @Firestormm seems to think I did. Those who are avoiding the IOM issue might therefore not vote, nor would those who know very little or nothing about the IOM issue. So those who are in the know, and who are motivated, might be predominantly those who oppose the IOM and support our experts, like me. Its something that has to be kept in mind, the people who read these threads are probably a self selecting group, and much more focused on the politics than most.

However if enough vote and the trend of over 90% continues, then I doubt its such a response non-response bias, though it might still contribute a little to the numbers.

So if the trend continues it would be fair to say that those who are concerned about scientific and political advocacy overwhelmingly oppose the IOM on PR and support our experts, but it would not be fair to say most on PR do unless we have a poll with thousands of voters and a clear trend is evident over such numbers.

PS I confused non-response bias with response bias, hence the confusion. Ooops. Sorry.
http://en.wikipedia.org/wiki/Non-response_bias

It is hard to judge because in general polls on any topic do not get tremendous responses. I do understand though that many who are not that interested in the topic might not even see this thread since it is in the advocacy/IOM section.

 

[Iquitos]

@Neilk wrote:



Exactly. Something whose process is root and branch problematic and fretted with disingenuousness, that made @jspotila "shake with rage." that has taken place in a larger context of dismissal and contempt, is not owed an antiseptic activism of "postivity and professionalism." This is the attitude that our major advocacy organization, CAA, employed for the last quarter century and has garnered precious little, except earning more condescension and phoniness. It's a matter of self respect.

While I think well of the m.e. experts appointed to the committee, and expect them to put a brake on the process, if things go badly, I don't think the IOM process, or anything generated by the NIH, cares about patient input.

Support the letter of protest. This is a waste of money and time, and just because it's presented as a fait accompli doesn't mean we should adopt a go along get along attitude.

Even if the IoM does a marvelous job, which I doubt based on their track record, it still is true that this "work" is not necessary if the government health establishment would just accept the CCC, and it is still true that this is a waste of a MILLION DOLLARS and 18 months of our lives. It's stalling once again.

 

[leela]

Even if the IoM does a marvelous job, which I doubt based on their track record, it still is true that this "work" is not necessary if the government health establishment would just accept the CCC, and it is still true that this is a waste of a MILLION DOLLARS and 18 months of our lives. It's stalling once again.

Yes, the CCC ought to have been accepted and adopted *ages* ago, and the discussion, one that would not necessarily cost a million fricking dollars, should currently be updating it to the ICC or better. I simply do not understand why this process cannot be, or has not been, expedited and uncomplicated so that we can all move on.

To be honest I do not believe the current state of medicine, science and politics is going to bring us many answers/help. But I add my voice to the opposition, because these people need to have some kind of reflection of just how dysfunctional we know their circus-show to be, and how not willing to tolerate it we are as fellow human beings.

 

[Nielk]

Nielk as you might remember, I am aware of the haste with which the letter was originally sent around asking for endorsement, and of that situation at the time. I am not saying for definite that those who signed did so for anything less than legitimate reasons to which they would not still adhere - I am saying however, that we are where we are now.

Yes. I do remember the haste and the fiasco. The initial experts' letter of 35 was sent out the same evening as HHS' announcement that they are going through with the contract. Many people commented at the time that had these experts know that it is a done deal, they would not have issued that open letter against the contract. A month letter there was another open letter from experts reiterating that they urge HHS to cancel the contract (which by leagl rights they could do at any point) and adopt the CCC now. This letter was signed by 50 experts.

You say that we are where we are, which is true. HHS has not cancelled the contract and the IoM is proceeding with their studies. Some people think that we should then resign ourselves that this is a done deal and work with the study. Others, believe that we should still push ahead and try to force a cancellation either by legal means or by pressure from congress. Some people are confused or can't make up their minds. This is why I penned this poll. people can voice their personal views.

You make some very good points and I agree with many of them. I think though that it remains important to provide context to any survey, and a previous comment, intimated that it was representative when I do not believe it can be thought of as such.

Can you please point me to the previous comment in question?

I do not really care if the response to IOM is an overwhelming 'we wish you hadn't bothered' from those few who do speak or register their feelings; I simply feel we should collectively make the best of a bad job and get on with it (not saying either that you aren't).

This is where your vote counts. Just as my vote counts. We each only have one vote here.

To be honest I am frankly amazed at the general lack of response to what some 'advocates' claim is such a big deal. Perhaps it could have been better and far more representative generally, if there had been more time; but as a 'community' we frankly suck in terms of getting together.

The CAA has said the same thing. We should all get together and work with this as one voice. It sounds great but, they will only agree to it if it is their voice that we agree to. I too want us to speak with one united voice. I want the CAA, PANDORA, PR, all organizations, advocates and patients to fight this and boycott the procedures. I actually feel that had we done this from the start, the chances of winning would have been that much more possible. How could they have proceeded with no stakeholders' input? It would not have looked right. So, I am frustrated too that we can't speak with one voice.

I don't know what the answer is but I do think things need to be better handled in future and that compromises need to be made if ever we are to move forward. And perhaps a better definition is something that will bring us all closer together.

Compromise is a very fine word. It all depends on what the terms of compromise are. What if the result brings a definition that is a vague definition which includes idiopathic fatiguing illnesses, fatigue from depression and PTSD? Would you be willing to compomise for peace's sake? What if the CAA then says this is good because it will bring in more patients in the fold which will force more studies and funding from the government. Let's all unite and accept it. Would you agree to that...as a compromise...for peace's sake?

The reason that I bring this example is that there is a point that we each have where we say: no, this is bad, I can't agree to it. That point is just different for some of us. For me, a definition which does not include PEM/PENE as a hallmark and does not demand immune and neurological dysfunction, is that point. I think that this will be a major struggle with this study because of the 'unknowns' on the panel and because of the demand for an evidence based study.

 

[Sparrow]

I know 7 votes arent many but seeing its 100% of the votes at this point agree, it appears it could be strongly said that this site supports "I oppose the contract. I support the experts letter urging HHS to adopt the CCC now".


That's good I think to see that most here think in the same way and I think its great this poll was set up. No-one can now say that those who run the site are taking a stance which the general PR community doesnt support.

Perhaps. But keep in mind that the response here has been extreme and very vocal from some people. That could certainly provide strong motivation for people who feel otherwise to keep their opinions to themselves. And response to a forum poll says more about what the most active members believe than what all members believe. I'm not saying that a majority here wouldn't choose some kind of opposition, but some of the more in favour of the contract may be keeping to themselves for fear of being excluded, having their future comment dismissed, or getting into heated arguments their system can't handle right now.


The poll up there says "your vote will be publicly visible". Could that be changed? With complete honesty, that made me more carefully consider which side of the fence to fall on when I was torn between two options.


I could have chosen to say that I support the contract. I sort of do now (conditional on how I see them proceeding), and maybe I should have picked that one just to have the viewpoint represented. I started out extremely skeptical and concerned, but further consideration and more information have changed my mind some. That statement doesn't entirely sum up how I feel, though. I ended up choosing "I don't like the contract, but since it is forging ahead, I support it," though that doesn't really sum up my true position either. I'm not 100% confident that the contract will be a step forward for us, but I also think there's a chance that it will be, and that the potential benefits could be worth the risk. I think working in cooperation with large government supported entities is probably the only way we are ever going to get the credibility and support our illness deserves, and working through the processes they are comfortable with is part of that. Some of the things I've seen now have convinced me that there's a chance they are at least sincerely trying to produce something helpful here, and that we are being recognized as a real and physical illness. Either way, I feel strongly that giving them more information to support them in their process can only benefit us. I truly do.

Is there a chance that they will turn out something disastrous? Maybe. But less so with some of our passionate advocates involved in the committee. Is there a chance that what they turn out will be less good than the CCC? Yes. But it would also come out of the gate with a lot more ability to get doctors to pay attention to it and truly use it, which is not a bad thing.

I wanted to try to put my thoughts together more clearly, but am not up to it right now.

 

[Nielk]

@Sparrow - Thank you for pointing this out. I just changed the setting so that the individual voters are not visible. This is my first time posting a poll so I didn't realize there was this option. Now it is completely anonymous.

 

[slayadragon]

I would like to see this poll made more prominent on the Phoenix Rising board, so that more people are able to participate. Or even better, have it mentioned as a blog entry. I wonder how the best way would be to make that happen.

 

[golden]

The support for the CCC is only temporary. Our experts want to use it as a start to build on I think. Its a minimal position, the minimal acceptable criteria that is well understood and has been extensively used.

I support our experts. If we don't support them, who have we got worth supporting?

We do have some experts on the IOM panel, and that might prove interesting as things move ahead. I would much rather our experts could move ahead on their own without the IOM, as the methodology the IOM uses is not suitable for our situation, and indeed is not optimized for disease definition criteria, its optimized for treatment options and specific diagnostic tests. Its also a very fallible process, especially when the research is highly skewed as it is in our disease. I expect many heated internal arguments in the IOM panel. I hope our experts can persuade some of the other panel members. I would much rather they didn't have to, and the CFSAC recommendation for a meeting of experts and patients to discuss how to proceed were to occur instead.

My understanding is the CCC is an ME criteria, but uses ME/CFS as a nod to political realities: ME is called CFS in the US. By the ICC they decided to drop CFS altogether.

Dr.Hyde is still alive isn't he? where does Dr.Hyde and his definable, testable M.E. fit into the scheme of things...

are there any 'Dr.Hyde ' minded 'experts' on the panel.

 

[golden]

Hi golden,

If you would like more information about this IoM contract and process, you can read this thread about the chronological events - http://forums.phoenixrising.me/index.php?threads/the-chronological-events-
of-the-hhs-contract-with-the-iom.25933/
You can read many different blogs written about it here - http://forums.phoenixrising.me/inde...nd-articles-about-the-hhs-iom-contract.26062/

The reason why my option only mentions the CCC is because that is what our experts have decided as a group to endorse. It might (and it probably is true) that other criteria are better, like the ICC or Dr. Hyde's, but the CCC has the biggest chance of being accepted and adopted by HHS. It has been in action for years and many studies are being used with the cohort fulfilling that criteria. Once the CCC gets adopted, our experts can work on refining it.

I didn't feel that cancellation of the IoM without adopting the CCC by HHS is a viable option because where would that leave us? Back with the Fukuda? It is clear that patients don't want that.

As far as non-citizens are concerned, I think that the politics in the U.S. is really universal because most studies of diseases are being done in the U.S. Whatever is decided here, will eventually effect everyone around the globe. They all should have a say as to the process.

The first link provided I can't access due to my technical equipment .

would it be possible for anyone to copy and paste it for me in its entirety so i can access it. Its too complicated to explain why i can't .

Best
Golden

 

[Snowdrop]

Dr.Hyde is still alive isn't he? where does Dr.Hyde and his definable, testable M.E. fit into the scheme of things...

are there any 'Dr.Hyde ' minded 'experts' on the panel.

@golden

Hi golden

When I was first diagnosed with ME on returning to Toronto and a new Dr I went to an ME gathering with a friend and Dr Hyde was the speaker.

DR Hyde practices in Ottawa and from what I remember his position is to do a GREAT MANY tests to exclude possible missed diagnoses. If all else is eliminated than the ME diagnosis is put forward. I don't believe that there is any specific test that he does that confirms ME.
SD

 

[golden]

@golden

Hi golden

When I was first diagnosed with ME on returning to Toronto and a new Dr I went to an ME gathering with a friend and Dr Hyde was the speaker.

DR Hyde practices in Ottawa and from what I remember his position is to do a GREAT MANY tests to exclude possible missed diagnoses. If all else is eliminated than the ME diagnosis is put forward. I don't believe that there is any specific test that he does that confirms ME.
SD

@golden

Hi golden

When I was first diagnosed with ME on returning to Toronto and a new Dr I went to an ME gathering with a friend and Dr Hyde was the speaker.

DR Hyde practices in Ottawa and from what I remember his position is to do a GREAT MANY tests to exclude possible missed diagnoses. If all else is eliminated than the ME diagnosis is put forward. I don't believe that there is any specific test that he does that confirms ME.
SD

Hi Snowdrop,

I think, the Dr.Hyde protocol would be a great burden lifted from me if the NHS would adopt it.

my brain truly can not organise all the information and differing view points, plus I keep on forgetting. I think i may have to give up trying to contribute as i think i lag way behind.

i have sourced this link which explains the M.E. tests which sound pretty convincing to me, sorry i cant pull relevant bits out from the link:

http://m.hfme.org/site/mobile?dm_pa...41924925&fw_sig_tier=1&fb_sig_network=fw#1301

Its a two pronged approach, testing for M.E. and also testing for all other physical illness until the problem is found.

Golden

edit: just re-read the link and Dr.Hyde definately states:
"
M.E. is not a diagnosis of exclusion or an untestable disease."

 

[Snowdrop]

@golden
You've jogged my memory with the link. I remember now that Dr. H showed us some kind of brain scans and there were white areas (masses) that were indicative of ME.

I may have blotted that out because I've had scans done in the past and they were negative.
But I definitely have ME.

Although I don't think they were looking for ME or white spots when I had tests done, I just kinda assumed as a non medical layperson that that sort of thing would be obvious even when looking for something else. Now I'm not so sure.

I just briefly perused the link so there's more there but like you my mind is not good at organising and remembering the information I take in.

As for the NHS. . .you can add OHIP (Ontario Health Insurance Plan / our gov't health benefits fall under provincial jurisdiction)
They are rather uneven in their coverage Dr Hyde has to fight the system a lot. There are generally some costs that the patient pays.
SD

 

[hikinglo]

Nielk,

See, Patricia Carter's petition at

https://secure.avaaz.org/en/petitio...ccept_the_CCC_definition_of_ME/?pv=4&mobile=1

and Mary Dimmock's petition at

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

I believe the two petitions mentioned above may be a historical first for this illness to see in black and white the sheer number of people in the ME/CFS community who have come together to express their opinion (if I am wrong and there have been other such advocacy efforts that have shown numbers larger than seen with these petitions, please let me know so I can modify my post).


Wally

Hi Wally,

This petition to recognize Myalgic Encephalomyelitis in the U.S. as a serious and debilitating disease was started way back in 2001, before most PWCs in the U.S. knew what M.E. was, and during a time when dial-up was a near-death experience to PWMEs. Few with cognitive impairment could figure out how to use an computer, much less sing up for an online forum. (In other words, things moved very slowly!)

We did not have the escalation in attention that XMRV has given the current generation of advocates, nor the tech skills.

This petition's co-creator was our recently departed warrior and Awareness Day Founder, Tom Hennessy. Many of the petition's signers are dead now too, or else I'm sure they would have signed the petitions in your post. It's currently showing 8,724 signatures. It hasn't had much publicity for a decade yet a few people have found it and signed more recently. The wording is a dated, but the essence is understood.

http://www.petitiononline.com/MEitis/petition.html

(Tom Hennessy launches the petition):
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=CO-CURE;55666e08.0103B

Tom delivered over 6,000 signatures to the Dec 2003 CFSAC, tossing the pages furiously into the air during his testimony, after he'd been harassed the evening before by government security at his hotel (he minced no words, spoke truth to power on his website R.E.S.C.I.N.D., and govt took him literally). HHS security escorted this visibly ill man to the meeting and guarded the door to the conference room at HHS. You will not find these details Tom mentioned in his testimony in the public record of the CFSAC Minutes; they "mysteriously" never appeared.

To add insult, we believe HHS ex officios, and perhaps one "advocacy" org coming under contract with the CDC, coerced Chair Dr. David Bell into tabling the Name Change Working Group before it finished its task at the outset of the meeting, even though we now had a definition hot off the press (CCC) to go with a new name. A decade ago, HHS officials turned their backs when we all called for the government to adopt the brand new CCC.

If anyone here thinks we're abused now, well, the abuser gets worse as long as the victims continue to take it. Many have long given up hope provided by petitions and online forums. Our experts have not forgotten though, and are able, which is why they penned a public letter to the Secretary, taking an unmistakeable stand.

Thank you, Wally, for taking a stand too!

(Note: Mary Dimmock made another good petition showing support for the Experts' Letter):
http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/

 

[justinreilly]

@Nielk, Is possible to change the second choice to substitute "am not opposing" for "support"? I think that would be much more reflective of the attitude of people who would pick that choice. I think it's unlikely that people really 'support' a contract they don't like just because it exists and is proceeding.

Proposed blackened version:
"I don't like the contract, but since it is forging ahead, I support am not opposing it."
I don't like the contract but, since it is forging ahead, I support it