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

[CBS]

Do you think that all those organisations that spent $1m on this will now change their view about the IOM's credentials for writing this report?

I think that "all those orgs" got exactly the report that they wanted, not one word more or none word less, from the paned that they selected.

 

[Sasha]

I think that "all those orgs" got exactly the report that they wanted, not one word more or none word less, from the paned that they selected.

You're the third person to quote my question without answering it.

 

[CBS]

You're the third person to quote my question without answering it.

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?

 

[Ember]

I'm afraid I don't see any connection at all between what you're saying and what Tina said, or any relation to my second question. Let's turn to my third question, then...

You're the third person to quote my question without answering it.

I didn't quote your loaded question, Sasha, doubting that government agencies ever believed the IOM to have the credentials for writing this report. Why would I choose to answer you in the face your earlier dismissive response?

 

[snowathlete]

I haven't read all the thread but I did read the blog that the topic is about.

I agree with what I think Tina is getting at: that some people/groups appear to be unwilling to accept anything other than exactly what they demand; which when you're up against government is just not a strategy that's got much chance of success. Then when you consider that it's up against a sizeable portion of other patients who welcome the IOM report...What do people expect to happen?

I do wonder if there is any scenario that anyone rationally thinks is going to happen, where the government turns round and says, "Your right, we're wrong, scrap the report, scrap the evidence, we'll just do what you say."
That seems to be what some people are asking for. It aint gonna happen though, is it.

Well, I guess I can live with that...Except, as Tina points out, potentially such a hardline view could actually give the gov't a 'get out of jail' card and they could reject the IOM report on the grounds that the patient group is divided and until there is some new evidence they can't make progress. That would mean another decade of Fukuda. Go read some of the BS that gets published based on a Fukuda cohort...

And before someone says that the new IOM definition is as bad as Fukuda - that's a nonsense. It's just propaganda, and doesn't stand up to scrutiny. You can make a reasoned argument that the IOM definiton isn't as good as the CCC or the ICC (not something I agree with at all, but a logical reasoned case could be made) but our fail point is not CCC or ICC, it's Fukuda.

So perhaps some people are increasing the risk of us ending up with another decade of that by being unwilling to compromise, to recognise how the world works and that progress is always incremental. I think I have a right to be pissed off about hardliners increasing that risking .

To quote Tina's blog:

And even if I had served on the committee, might I have made a compromise because causing a stalemate on the committee or putting in a dissenting opinion would have done harm to the good of the whole?

I wish people would ask themselves this, because it's a serious issue. If you answer that you wouldn't compromise then like it or not, by definition, that does make you a hardliner.

I just want to get well, like everyone else (of all opinions) but I recognise that there will have to be compromises along the way for that to happen, and an attitude of zero compromise - which is the message I see some people giving - will only slow things down.

 

[Ember]

To quote Tina's blog: "And even if I had served on the committee, might I have made a compromise because causing a stalemate on the committee or putting in a dissenting opinion would have done harm to the good of the whole?" I wish people would ask themselves this, because it's a serious issue.

Sometimes such pressure is called co-opting. The IOM deliberation process is credited with being a consensus process.

 

[snowathlete]

Sometimes such pressure is called co-opting. The IOM deliberation process is credited with being a consensus process.

Yes but you recognise though that it's a broad consensus, I would imagine? In a 300-odd page report, each of the 15? members are unlikely to have agreed with every single word and sentence; but they agree with the spirit of the document and consider it to reflect their views on what constitutes progress.

 

[Ember]

Yes but you recognise though that it's a broad consensus, I would imagine? ... They agree with the spirit of the document....

Is that what you understand when the International Consensus Panel reports that "the authors, representing twelve countries, reached 100% consensus through a Delphi-type process?"

 

[snowathlete]

Is that what you understand when the International Consensus Panel reports that "the authors, representing twelve countries, reached 100% consensus through a Delphi-type process?"

I notice you didn't answer my question. But I'll answers yours: Yes.

The statement you quoted makes it sound like there was 100% agreement because it uses a percentage, and thats good because they showed they were united in the spirit of the document and that they all thought it would be a good step forward, but of course they didn't agree 100% on every single thing.

Likely some people would have preferred other wording, others would have preferred some bits deleted, some others still would have preferred some additional things added. But when you are reaching a conclusion as a group you have to be willing to compromise, often by means of discussion and then majority view, and if you find the end results acceptable (which isn't the same as ideal) then you agree that you all agree and sign it off with your names against it.

 

[Ember]

But when you are reaching a conclusion as a group you have to be willing to compromise, often by means of discussion and then majority view, and if you find the end results acceptable (which isn't the same as ideal) then you agree that you all agree and sign it off with your names against it.

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.

 

[CBS]

<snip>
So perhaps some people are increasing the risk of us ending up with another decade of that by being unwilling to compromise, to recognise how the world works and that progress is always incremental. I think I have a right to be pissed off about hardliners increasing that risking .

To quote Tina's blog:


I wish people would ask themselves this, because it's a serious issue. If you answer that you wouldn't compromise then like it or not, by definition, that does make you a hardliner.

I just want to get well, like everyone else (of all opinions) but I recognise that there will have to be compromises along the way for that to happen, and an attitude of zero compromise - which is the message I see some people giving - will only slow things down.

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.

 

[usedtobeperkytina]

CBS, I don't know if your last post is in reference to my blog or comments made by others here. But I am not in favor of suppressing any view of people, both experts and patients, who are concerned or see possible problems with the IoM recommendations. I too see things in it I think should be different and have written on my blog about those things. But I have also said I will support its implementation despite that I don't think it is ideal. So feel free to discuss and question and criticize, but if that's all people do, if no one speaks up and says, "let's act on it," then all we have is continued debate and criticism. So I don't want to suppress dissenting views. I just want other voices to speak up also.

It is not possible to get consensus of all patients and experts. My example is Congress. You won't have 100% voting together on anything. Usually, the way it used to be, there would be some give and take on both sides until you could get something the majority would vote yes on. But because so many in Congress now take a firm stand, on both sides, there is no give and take, so no action is taken. Similarly, while the government doesn't need our approval, we don't have a vote, we could kill any action on it simply by drowning it in negativity. My point is that if we don't push for its implementation, which includes progress in some areas, we might end up with CFS Fukuda for many more years.

It has left the so-called scientific process now. It's gone back to governmental processes, which does include calculating cost versus benefit to them on any action. They could very well decide to stay with Fukuda CFS because the IoM report does not have support from any but the 15 who wrote it. And that seemed to be the way it was largely going from the public statements I saw right afterward. So, the other voice needs to speak up too.

And I do believe one of the nonME/CFS experts was on the committee because he has experience in forming disease criteria. I might be wrong, but I recall something about that.

 

[alex3619]

That's a refreshing comment in a climate where some choose to characterize those they oppose as "hardliners." The IOM Committee has yet to clarify the relationship between their proposed SEID criteria and the ICC.

In part because they cannot. Its disturbing that an evidence based review proposes a new definition and didn't test it. I am with Jason and Stein that we urgently need a review and perhaps a proper study just to make that comparison.

Much of the pro- and anti-SEID definition rhetoric has been on things we cannot know for sure. Those things need to be addressed in one or more studies.

 

[Ember]

In part because they cannot.... Those things need to be addressed in one or more studies.

In calling for confirmatory studies, the International Consensus Panel didn't simply wait for such studies before clarifying the relationship between the ICC and other criteria. Instead they recommend: “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

But the IOM Committee continues to flounder. First Dr. Bateman commented, “I don't recall anything in the IOM report that states the term Myalgic Encephalomyelitis, or ME, can not be used to describe someone who meets published ME criteria.” And now Dr. Clayton writes:

The new name, which should be accompanied by a new International Statistical Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) code (sic), also distinguishes this definition from previous ones. Thus, patients who meet these new criteria should be diagnosed with systemic exertion intolerance disease even if they also meet criteria for earlier variants of ME/CFS.

Dr. Clayton doesn't indicate which criteria are to be considered “earlier variants of ME/CFS.” Equally, she fails to state where SEID should appear in ICD-10-CM.

 

[Valentijn]

But the IOM itself has no credentials when it comes to writing clinical diagnostic criteria.

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?

 

[Valentijn]

The fact that it did happen, does not mean we need to accept it. Should the freedom fighters not have fought for freedom from slavery because the government already legalized it. Should they have not protested against it?

And what do you rationally expect to gain by fighting the IOM report? Is HHS going to suddenly say "OMG, so sorry, let's adopt the CCC or ICC pronto!" Nope, not a chance. They have proven that they will not do that under any circumstances.

Are they going to say "Oh, we don't like it either - it requires PEM now! Sure, we'll reject it. But Fukuda has been accepted by researchers for many years, so that's a good definition and we'll keep using it." Seems a lot more likely, don't you think?

Or how about "We really wanted something that sounded psychosomatic, or at least very ambiguous and not at all serious. Let's fund a different institution to give us that."

If we protest the IOM report, there's approximately 0% chance of getting what we want: the ICC or CCC. There's a small chance that they'll try to replace it with something worse. There's a very big chance that they'll use it as an excuse to ignore the report and hang on to Fukuda - though they will try to do that even if people aren't protesting the IOM report.

I've asked you this before, but you still don't seem to have figured it out: What do you want from this protest? How do you expect this protest to achieve it?

 

[A.B.]

Speaking of grassroots movement and AIDS. Did they ask for the right diagnostic criteria for AIDS, or for more research and effective treatments?

 

[alex3619]

2) Delusions of power (yours and mine) when it comes to influencing governmental decisions

I wouldn't put it quite that way. Its more that we are not piloting this ship. We can huff and puff from different directions but the prevailing winds, mostly from government, set the course. Its the issue that we are largely excluded in decision making, and that government agencies in many countries are using managerial processes, EBM, in biased ways to get their desired outcomes, either intentionally or fortuitously.

I assert again the IOM process is not science. It never left government. The IOM were subcontracted. Consensus processes are political and managerial. They have their place, and that place is indeed about setting policy, and it can sometimes get it right. However in controversial and under researched topics the risk of serious error and bias are huge. Please note this is risk, not certainty.

Let us look at ME at the UK. The typical ME patient in the UK is offered nothing useful, and there are policies that harm them. The NICE guidelines are not fit for purpose. CBT/GET clinics are worse than white elephants, it appears (and they could do studies to try to refute this if they dared) that these are herds of white elephants raging through the populace and harming sick people who cannot get away. NICE is a government recognized institution that works on EBM principles. The IOM has a similar role but structured differently.

ME is massively under diagnosed in the US and around the world. CFS is more commonly diagnosed, and its massively under diagnosed and misdiagnosed if the data so far is right.

We have very little influence on adoption of ME. Ditto SEID. Ditto getting rid of Fukuda.

Who has influence in research circles are funding agencies and the researchers. A researcher chooses definitions and applies for grants. Lately they have been using PEM based diagnoses, including the CCC. Its that research that has, in my view, had far more impact than all the advocacy we can do. We could probably do more if we could encourage our researchers to use better research definitions more consistently, but our impact on ICD, insurance and the average primary care provider is dismal. One of the best things we ever had was all those researchers supporting the CCC. It was only appropriate that many in advocacy backed them.

Whatever we do now will have to have major impact in just years. The landscape is changing fast and our efforts will likely have to be refocused again in just a few years.

Which means that long term goals are likely to achieve nothing in the current climate. We need to be thinking about short term strategy, and influencing the process for the next review if it happens.

The IOM report promotes increased medical education, a new CDC toolkit, the burying of Fukuda, and non recognition of psychogenic therapies. These are all good things we can capitalize on. This does not mean we should ignore the political travesty that led us here.

The IOM report highlights seriously inadequate funding and research. W can capitalize on that.

Its researchers who decide on definitions. There is nothing stopping any of them using an ME definition, but funding can still cripple their efforts if a grant review panel does not like what they are doing.

We can advocate for more say in the process. We typically get ignored, with a paltry input for a limited time period on a limited range of issues.

This is like my fifth attempt to post this. It keeps failing to post.

 

[alex3619]

more research and effective treatments

This is the heart of the matter. However diagnostic criteria can assist research. On the other hand, SEID is clinical and researchers will probably add (non-standardized) additional criteria for studies.

 

[Bob]

I don't think our differences are reconcilable with regards to the best short-term outcome. Some people see the IOM report as a major step forward and a huge opportunity, that we absolutely can't reject, and others see the community sleep walking towards disaster and that this is how the government organizations are going to trick the community into permanently accepting a disastrous settlement.

I'm sympathetic to all points of view - I understand where we're all coming from. The IOM criteria are not perfect, and many are deeply unhappy with them. But many of us believe that they are a vast improvement on Fukuda in defining a disease that involves post exertional exacerbation.

One thing we can all agree on is that we all want to see a dramatic change to the way ME is treated and funded. We want $100-200m a year, not $5m, for research. And we want clinical centres of excellence where people will be investigated for immune disorders, autoimmunity, rare diseases, genetic abnormalities and early stage cancer etc. And where immunological treatments are routinely prescribed.

The IOM report lacks recommendations re the latter, which is a major issue for many people.

My own opinion is that we should bag the IOM report, and see what progress we can get off its back. i.e. more govt recognition and funding. But that our campaigning shouldn't stop there. We should continue to campaign for all the things we want.

With regards to the CCC/ICC, I honestly don't think they are a panacea but I'm not against people campaigning for their adoption... But I do have a slight problem with people advocating for them to be used instead of the IOM criteria... I think that strategy will lead nowhere partly because the community is split, and partly because the govt. agencies have already set their course. My opinion is that you should be campaigning to have the CCC/ICC adopted alongside the IOM criteria. I think such an approach would keep most of the community on your side. But I can see that introducing an amended and nuanced argument to the current advocacy efforts may be a problem in terms of building a head of steam for a campaign, so perhaps it wouldn't be practical to change course right now.

As others have said, the government agencies aren't now going to say: "oh yes, we were wrong, you're right, we'll ditch the IOM report, and we'll adopt the ICC now (even though you said you wanted the CCC)."

So my personal opinion, and it's just my opinion, is that I think advocating for the ICC to be adopted instead of the IOM criteria is probably a poor strategy - it divides the community and it isn't going to work. I think an alternative strategy is probably required if you want the ICC adopted. If you had a strategy that didn't divide the community, then I might even get on board.