"Please Don't Let it Die" by Tina Tidmore

[Sean]

The goal of the early phase of AIDS activism, the in-your-face stuff, was to get the government to initially recognise and start dealing with the problem.

But ME/CFS had already got that recognition. The (USA) government had accepted that there was a serious problem, and commissioning the IOM report was their response to it.

Once AIDS was officially recognised and started getting funding and support, the in-your-face activism started changing to a more mainstream diplomatic version, and rightly so, they have done well out of that evolution.

 

[Sean]

I think the CCC and ICC have a role in informing the research version of the IOM criteria. (Assuming there is going to be one.)

 

[Sasha]

I don't think that this was an effort to do anything other than re-brand the disease and to make it appear that the government was doing something constructive. Therefore, I think that the premis of your question, "will they change their view about the IOM's credentials?" is false. The orgs knew what they were looking for and they got it. The credentials of the panel are irrelevant as they fulfilled the funding agencies' goals. In fact their credentials are perfect (for the orgs but not for the patients), recognized as advocates - good enough to generate calls of "who are we to question" - but lacking any real training in how to develop a valid set of criteria (where was Lenny Jason and what's his view of all this?).

How's that for an answer?

Well, it's still not one that bears any relation to my question. I suggest we leave it there.

 

[Sasha]

I didn't quote your loaded question, Sasha, doubting that government agencies ever believed the IOM to have the credentials for writing this report.

We are now so far away from the purpose and context of my question that I don't think there is any point in continuing to discuss it.

 

[Sasha]

A question for those who oppose the IOM report and would prefer ME/CCC/ICC.

Which do you prefer: SEID and the IOM criteria or CFS and Fukuda?

The purpose of my question is to try to see whether you are risking something that you value, even though you don't value it as highly as ME/CCC/ICC.

I suspect a lot of us are wondering that.

 

[Nielk]

A question for those who oppose the IOM report and would prefer ME/CCC/ICC.

Which do you prefer: SEID and the IOM criteria or CFS and Fukuda?

The purpose of my question is to try to see whether you are risking something that you value, even though you don't value it as highly as ME/CCC/ICC.

I suspect a lot of us are wondering that.

I am not asking HHS to go back to Fukuda. This all started in order to move away from Fukuda with CFSAC's recommendation.

You have stated that it doesn't make sense to ask HHS to adopt the CCC or ICC because they will never listen to us. They have not listened to our experts, advocates and patients urging them to stop the IOM process before it started.

Why then, are you contending that they will listen to a group of us now and cancel out the results of the IOM?

If HHS ignores the IOM and reverts back to Fukuda, it is because that is what HHS.wants to do. It will have nothing to do with those that ask for the CCC, ICC.

To use this as a threat/tactic to try to convince those in the opposition to change their mind, is not right.

 

[Bob]

Which do you prefer: SEID and the IOM criteria or CFS and Fukuda?

To use this as a threat/tactic to try to convince those in the opposition to change their mind, is not right.

Sasha's question is a legitimate question, Nielk, and I think it's unfair and unconstructive to label the question as a 'threat'. You may not agree with the premise of the question, but Sasha's question is central to the differences of opinion in the community. And I think the issue needs to be carefully & widely considered. A legitimate fear, that many of us have, is that if we reject the IOM report, then we will be left with chronic fatigue for another decade. This is a legitimate fear. If you haven't got a convincing answer to that question then I think you'll struggle to carry the whole community with you in your advocacy efforts. And if we are divided, then our advocacy efforts are probably doomed to failure, in my opinion.

 

[usedtobeperkytina]

I want to say that many might not notice that in my blog, I mentioned not only criticism from patients, but the criticism from other experts and organizations. I think these might actually have some influence over the CFSAC, which might actually cause them to vote in the spring meeting to not accept the IoM report recommendations. Then, we would be in a fix, for sure.

I think many of the points mentioned are legitimate. But I think they should be addressed in the next round within five years. In the mean time, let's take SEID as it has been proposed so we can kill Fukuda and CFS. Addressing all these criticisms in a scientific way will require more time and money. And we don't have either right now.

I also question being on the outside of this committee and saying they got it wrong. These are our experts. Rowe, Klimas, Bateman, Natelson, Lerner, Chu, Davis, etc. I wonder if some of the experts who say they got it wrong would have felt different if they sat on this committee and actually had to come to a consensus with others. I imagine some of the very points being mentioned now were mentioned by individual committee members. Evidently, there wasn't enough evidence to support that position so the majority was against it.

While I see flaws in the "evidence based" standards, I think it could work for our disease because our disease is what it is. Evidence base standards applied to our disease will actually prove what it is. Either way, it's what has to be done for anything in science to have credibility. So any changes to name or criteria must be in line with those standards. And that takes time and money. We now have something with that EBS label on it and its better than CFS Fukuda. Let's use it and then we can make it better.

 

[Sasha]

I am not asking HHS to go back to Fukuda.

No one is saying you are.

You have stated that it doesn't make sense to ask HHS to adopt the CCC or ICC because they will never listen to us. They have not listened to our experts, advocates and patients urging them to stop the IOM process before it started.

Why then, are you contending that they will listen to a group of us now and cancel out the results of the IOM?

I explained earlier that if a vocal group of patients oppose the IOM, it gives a great excuse to the to dismiss the report - which includes many things that patients want, as Tina points out - and go back to the damaging status quo. I'm not saying they will act in response to what patients want. I'm saying that they could use what patients want as an excuse to do what they might want.

If HHS ignores the IOM and reverts back to Fukuda, it is because that is what HHS.wants to do.

I agree.

It will have nothing to do with those that ask for the CCC, ICC.

I disagree. Those asking for the CCC/ICC will have given them a face-saving excuse to do so.

To use this as a threat/tactic to try to convince those in the opposition to change their mind, is not right.

I can't see how you perceive my question as a threat. What I'm sincerely trying to do is to understand your position. Currently, I genuinely don't know if you perceive the same risks as the rest of us in what you're doing or if you simply don't value the thing that you're risking.

I'm serious, Nielk, and I'm asking in good faith. This is an opportunity to help many here on Phoenix Rising understand your position. And the question isn't addressed to you alone, of course. It's to all those reading this thread who actively oppose the IOM report and want it rejected.

 

[snowathlete]

A majority agreement isn't the same as a consensus agreement. All members must accept the results for there to be a full consensus. I don't know how you've arrived at your conclusions about the International Consensus Panel's decision-making process, but we can agree that the IOM Committee doesn't seem to have achieved 100% consensus. I've commented further here.

Looks like you misunderstood my point. Probably my fault. I have chaired Delphi type meetings and what happens is that the majority views on things prevail. You might have 6 out of ten people holding the same sort of view with the other 5 in a group of ten expressing different views. There is discussion and peoe are moved toward other people's ideas and things can go in any direction, but it tends to go in a majority direction because more people are arguing that point of view. Even if it goes in a different way, the point is that it is still a majority view - say 1 out of those ten makes a convincing argument and in the next round their view is adopted by 6 others, you now have 7 people holding a view that in the previous round was only held by 1.
The process naturally ends up reflecting the majority but rare is it that that view is held by everyone.

But on complex topics it is not just one issue, it is a dozen, and overall there is group consensus. That is not the same as everyone agreeing 100% on everything, which is a utopia - it's just not how humans are and is an impossible ideal.

You say we agree, but we don't. You want it both ways: You want to relegate the IOMs agreement to less than 100% which suggests it's inferior to that of the ICC by insisting the ICCs agreement was 100%.At least this is what I am interpreting (it would be a lot clearer if you answered my original question as I did yours to avoid any potential misunderstanding).

What I am clear on is that consensus is consensus under the reality that people compromise by broadly agreeing. This was the case in the ICC and IOM, as with all consensus agreements on complex subjects.

 

[snowathlete]

Two themes coming through loud and clear:
1) Fear and suppression of dissenting views (if we don't all agree we're doomed for another decade).
2) Delusions of power (yours and mine) when it comes to influencing governmental decisions

Since when was it desirable, let alone possible to insist upon consensus amongst patients and when did the need develop for a "prevailing" view/dogma?

I might think you're wasting a lot of energy being pissed at me for not agreeing with you but I'm not losing any sleep over it (you're entitled to disagree) and I'm definitely not worried about your views carrying enough weight to have any influence upon my health.

There is no supressing of views going on; I think you need to recognise that I am expressing my view that hardline views have potential to risk causing harm while achieving nothing, and this is very much on topic as it is the same opinion expressed in the blog being discussed.

I dont want this topic to go off topic, or become one that needs moderating, but my focus in advocacy is always entirely focused on influencing policy makers. I spend no time trying to influence other patients health - that would be counterproductive. Patients have a small voice, but I do believe we have a voice if we can form reasoned advocacy that government may be receptive to. I see some efforts as too aggresive and dont think government will be receptive to that kind of advocacy.

I don't have fear of other people's opinions either, I am not emotive in that way. I get pissed off that people who could be helping us have more of a voice, are instead destructive. I simply see some views and actions as damaging to progress. Your health is not my issue either, it's yours, but I think it is telling that you were the one to bring it up, not me. Please don't blame me for your, or anyone else's, health issues or suggest that I am trying to affect other people's health, I'm sure you didn't mean that as a personal attack, but some readers might misinterpret what you said, so perhaps you could reword it so that no one else takes it the wrong way. Thanks.

 

[Nielk]

[

No one is saying you are.
I explained earlier that if a vocal group of patients oppose the IOM, it gives a great excuse to the to dismiss the report - which includes many things that patients want, as Tina points out - and go back to the damaging status quo. I'm not saying they will act in response to what patients want. I'm saying that they could use what patients want as an excuse to do what they might want.

I agree.

I disagree. Those asking for the CCC/ICC will have given them a face-saving excuse to do so.
I can't see how you perceive my question as a threat. What I'm sincerely trying to do is to understand your position. Currently, I genuinely don't know if you perceive the same risks as the rest of us in what you're doing or if you simply don't value the thing that you're risking.

I'm serious, Nielk, and I'm asking in good faith. This is an opportunity to help many here on Phoenix Rising understand your position. And the question isn't addressed to you alone, of course. It's to all those reading this thread who actively oppose the IOM report and want it rejected.

I appreciate that you are attempting to really understand my position. I thought that I have clarified it but, I will try again.

This is what I believe:

There are political reasons why HHS has neglected, marginalized and tried to make ME/CFS go away since the CDC went down to Lake Tahoe in the 1980's. For the past three decades, all of their actions have been to stifle any advances and recognition for this disease. This should not be news to anyone, Everyone knows that the NIH funding for this disease has been pitiful and a real joke. This has been pointed out by CFSAC year in and year out. The fact that the IOM report mentions this is nothing new, The list of CFSAC recommendations just grows year after year with refusals from the Secretary to abide by them. The CDC has refused to alter their toolkit for decades.

This malfeasance of HHS continued with their refusal to carry through with CFSAC's recommendation to convene a workshop of ME/CFS experts, advocates and patients to work on diagnostic and research criteria starting with the CCC.

Did you ask yourself why did HHS not follow through with that recommendation? They were not asked at that point to approve the CCC. They were asked to work on the CCC and improve on it by researchers and clinicians who have extensive experience with the disease. What reason did they have for not going along with that?

The reason cannot be that all diseases are defined by HHS so they could not let the medical community define this disease. The opposite is true! Diseases are defined by the medical experts in this country.

So why did HHS continue to oppose CFSAC, the 50 experts, the 171 advocates, the several petitions, the letters and the e-mails.

It is very important to keep these actions of HHS in mind because that's how you know what their intentions are. If you want t know someone's intention, watch their actions.

I believe that HHS is very happy with the IOM criteria and name. They asked for a simple criteria that any clinician or even nurse can easily diagnose and that is exactly what they got. It is so easy that anyone can diagnose themselves at home just like Dr. Oz stated on television. It has very little in common with the historical ramsay's definition, which is what they wanted. As far as the name, they are happy as well. They asked whether new terminology should be suggested and they did. This new name is a new entity with no ties to the historical ME - which is what they wanted.

There is no reason for them to reject the IOM criteria or name. They have allowed all the media blitz and articles that have been published in scientific journals. They will not go back to Fukuda and CFS. I think I remember (I might be wrong) that HHS got a copy of the IOM report a eek prior to its publication. If they had major problems with it, I am sure they would have held it back.

Why do I think that the IOM criteria and name is bad?

I think that the criteria are so broad that it will result in major overdiagnosis. I have no faith that all clinicians nationwide who no nothing about the disease and just get a pamphlet to follow will understand the intricacies of PEM. The rest of the symptoms are so common that many healthy people who simply suffer from insomnia from any cause can qualify for.

Because all of this symptoms are subjective, I (and several experts have already voiced this concern) believe that there should have been exclusions mentioned. Many conditions mimic these symptoms. The fact that no tests are demanded to rule them out is a mistake that could have major consequences for the patients. They could be suffering from a problem that if found, could be treated.

I don't agree that this complex multi-system disease can be properly treated by general physicians who spend at most five minutes with patients. I know that many are happy that now that will be able to get a diagnosis. But, what then? They have a name but no treatment? How will that help them?

I believe that the majority of patients who will be diagnosed using this criteria will not be suffering from Ramsay's ME. This will hurt the patients who actually do because they will be considered part of a watered down pool. No one will be treating the real ME any longer. I believe that I will be personally harmed by the wholesale use of this definition.

In addition, there is already talk of using the IOM criteria for research purposes and there is nothing that we can do to stop this. This will impede any scientific advance for finding biomarkers and treatments for this disease. This will harm all of us.

As far as the name is concerned, it is much less important to me. At this point, whatever they name it, it will always be considered as "used to be known as CFS". Only a testable biomarker will make a difference. I personally will never use the name SEID. I will use the historical name ME.

So, to answer you original question, do I want to take the risk that HHS will revert back to Fukuda, my answer is I don't think that there is any risk of that. But, I do think that it is very risky if they start using the IOm criteria.

 

[Nielk]

I don't have fear of other people's opinions either, I am not emotive in that way. I get pissed off that people who could be helping us have more of a voice, are instead destructive. I simply see some views and actions as damaging to progress.

I feel the same way, @snowathlete. I feel that the IOM criteria will be dangerous for those that suffer from the historical Ramsay's ME. We have opposing views of what the future will look like when the IOM criteria are set into action. I am not angry though at you for your view. I respectfully disagree though. I wish you could share my views nd come to my side as well. In what way are we different?

 

[Bob]

At this point, the only possible response that I have to Sasha and those who can only imagine a world in which her question does makes sense is: 42.

OK, on reflection, I can see that Sasha's question may not have been phrased helpfully: It was a binary question, and it was potentially based on a false premise.

But I think the issue that the question addresses goes to the heart of the debate and to the heart of the concerns for many of us within the community, which is: If we reject the IOM report then we may be stuck with Fukuda (chronic fatigue) for another decade.

This is possibly the no.1 concern amongst many of us who wish to see the IOM report implemented; We simply don't want to be stuck with Fukuda any longer. (And we consider the IOM report to be helpful.)

Many of us cannot buy into an advocacy effort that demands that the IOM report is rejected, because we don't like what we think is the most likely alternative. And we think the IOM report and criteria are a very helpful step in the right direction, if not perfect. (There are many exceptionally helpful aspects of the report, in my opinion. I think it's one of the strongest documents that's ever been published about ME/CFS.)

(Obviously, I don't speak for everyone, but I've heard a good number of people expressing opinions along these lines.)

From my personal perspective, in the immediate future, I think that advocacy efforts would be better directed towards demanding more funding for research and clinical care. We would all speak with a unified voice if these were the demands, and we could use the momentum of the report to make these demands and to make our voices heard.

I also think it might be helpful for us to reinforce the positive aspects of the report, rather than denouncing it in its entirely, as this would send a message to the authorities that they need to take those aspects seriously. e.g. objective exercise testing.

Once we've got the IOM report in the bag, then we can use it to our advantage, and start new advocacy projects along the lines of demanding immunological research and treatments, and demanding centres of excellence, and demanding the use of the ICC if that's what patients want. Right now, patients are fighting against patients, and that's going to get us nowhere. (Honestly, I think it's a recipe for complete failure at best.)

But I acknowledge that people feel very strongly about the IOM report on both sides of the debate. That's why we're having such fierce debates. And I do understand some of the points that people have been making against implementing the IOM recommendations. I suppose the difference all comes down to perspective about the best way to implement change.

 

[jimells]

If we protest the IOM report, there's approximately 0% chance of getting what we want: the ICC or CCC

Speaking only for myself of course, what I want is more funding. That isn't happening, and it seems to be getting worse. This is from Jennie Spotila's website:

NIH funding of ME/CFS research has bumped up against a deadline that could have dire consequences for 2015 and beyond. The primary mechanism for grant applications has expired.

Grant applications to NIH must be submitted in response to calls for proposals. Sometimes that takes the form of an RFA, in which money is set aside for a specific purpose. ME/CFS advocates have been begging for an RFA for years without success.

The last meeting of the CFS SEP [Special Emphasis Panel] to review ME/CFS grant applications was September 2014, and there is no meeting currently scheduled. In 2012-2014, the SEP met three times per year

I keep getting this image of our "friends" at HHS viewing these threads and having a good laugh. While everyone is fussing over reports that are not even policy decisions (these are only recommendations) they continue to sneer at us and refuse to fund research.

Funny how there is always money for meetings and reports that are sent to the Library of Congress, never to be seen again. Hasn't been two months since the IOM report was released, and not a peep from HHS?

Exactly who (names and addresses) has decided to not fund the research, and why? This is what we need to know in order to apply pressure where it can be effective. In the "olden days" perhaps a curious investigative reporter would have looked into these questions, but those folks mostly don't exist anymore. I have no idea how to get evidence of who is sticking it to us. Sorry. That's all I got.

 

[alex3619]

I think these might actually have some influence over the CFSAC, which might actually cause them to vote in the spring meeting to not accept the IoM report recommendations. Then, we would be in a fix, for sure.

One thing we have seen repeatedly is that CFSAC is toothless and will probably be ignored. Its not an effective body. If we could give it some real authority, some real influence, by advocating for changes in the rules governing CFSAC, then this might change. Its probably going to be very hard to do this though.

 

[alex3619]

Either way, it's what has to be done for anything in science to have credibility

This point I fundamentally disagree with. This managing science, not actually science.

 

[jimells]

The goal of the early phase of AIDS activism, the in-your-face stuff, was to get the government to initially recognise and start dealing with the problem.

But ME/CFS had already got that recognition. The (USA) government had accepted that there was a serious problem, and commissioning the IOM report was their response to it.

The government has yet to recognize the problem. Funding research is dealing with the problem; meetings and reports that conclude that we need more meetings and reports is not dealing with the problem. The P2P report specifically recommended more meetings on criteria before any more research is done:

A clear case definition with validated diagnostic tools is required before studies can be conducted.

We have their own report giving them an excuse to keep the brakes on funding the research, in addition to a very long list of actions HHS has taken to deny and delay funding research. I agree with the early AIDS advocates: without the in-your-face stuff, HHS will continue to not deal with the problem.

 

[Ember]

Who really cares about that now? The outcome was excellent. Why fight it, unless you intend to sacrifice progress in the name of impractical principles?

Anyone who considers the IOM outcome to be excellent should support it. I don't, and I don't choose to settle for crumbs. Neither do I consider my medical diagnosis to be an impractical principle:

"O Oysters, come and walk with us!"
The Walrus did beseech.
"A pleasant walk, a pleasant talk,
Along the briny beach:
We cannot do with more than four,
To give a hand to each."

The eldest Oyster looked at him,
But never a word he said:
The eldest Oyster winked his eye,
And shook his heavy head--
Meaning to say he did not choose
To leave the oyster-bed.

 

[alex3619]

We now have something with that EBS label on it and its better than CFS Fukuda. Let's use it and then we can make it better.

Its an EBM label, which is becoming more evidence based management than evidence based medicine. However this does not mean we cannot use it. For all the problems and issues we have been given a tool that can advance our cause if we pick carefully the points we want to push. That is the point of discussing advocacy. What points should be pushed?

As advocates we have long been naive about the political side of things, and get confused when politics, management and science intermix. This is not a slur, this issue really is confusing, to everyone. We are not alone in trying to sort out complicated messes like this.

We really do need to address some things from the report, but that is about ongoing issues. Like advocating for proper comparison studies. For example, if it can be shown in a study that SEID is very problematic then we have ammunition. Simply claiming it is problematic will not have much weight. However the flip side is also the case. If such a study shows it is the best or at least a credible alternative then there is little point in fighting it. We need such a study for clarity.

We also need to advocate for a bigger seat at the table. Our involvement is to a large extent only for show. We need to have more input at every stage of the process, so that all voices can be heard. This however is political, not scientific, though science can inform those voices.

However the IOM report gives us the basis, within political authoritative terms, to say there is weight and merit behind increasing funding and research, and educating the medical community so that we have more doctors who know enough to be useful.

Tools can be used for good or ill. I think the report is a tool that careful advocacy can use to great advantage. I also think its a tool that ill considered advocacy can turn into a problem.