ME/FM Action Network response to IOM report

[medfeb]

Are we talking at cross purposes? I don't see the point of this in the context of government-funded studies to drive government policy vs privately-funded criteria documents. What am I missing?

Maybe we are just looking at different aspects.

For me, the issue is one of how a disease is defined. The World Health Organization established the International Classification of Diseases to allow morbidity and mortality tracking of diseases globally. There is a strict process that includes international agreement on how new disease terms are added to the ICD. Countries are allowed to have country-specific modifications to that classification, which the U.S. does and I believe Canada as well. Those modifications are supposed to be ruled by standards that govern the kinds of changes that are made. It would impede global tracking if a country reclassified diseases any old way they wanted to, for instance from a neurological disease to a mental health disease.

But ICD only establishes the disease names and a brief description. It does not describe disease criteria. If each country defines its own separate criteria for a given disease, that would also impede WHO's goal of a common reference of diseases. And more practically for patients, doing that will make it difficult to build on the results of international research to identify treatments. While not necessarily country-specific criteria, we've lived the problem of discordant definitions for the same disease for too many years.

It strikes me that the IOM initiative is part policy and part disease definition. The policy part is to create a simple criteria that can be used by GPs in this country with our particular medical practices, insurance reimbursement, etc. But the other part is defining new criteria for a disease, which I believe ideally would be done with international input. As it stands now, its unclear as to what disease the SEID criteria are intended to describe, particularly on whether they are intended to describe the disease described by CCC and ME-ICC.

The lack of funding and the poor treatment of ME patients by the Canadian government - and really all governments - are very valid points. But they feel like separate issues from the establishment of new disease criteria.

 

[SOC]

Maybe we are just looking at different aspects.
...
The lack of funding and the poor treatment of ME patients by the Canadian government - and really all governments - are very valid points. But they feel like separate issues from the establishment of new disease criteria.

Ah, I think I see. The point is that the US govt shouldn't have made any disease criteria at all, not that they should have international members on a committee deciding internal issues?

This is what puzzled me

the lack of international input,

That doesn't sound like they meant that individual countries shouldn't make their own definitions, just that they thought the US should have taken international input on what is an internal process.

Frankly, the last thing I want is the UK government having any say in the definition of our disease. I'm just as happy that the US made it's own decision without any input from the UK.

Clearly, I don't understand The ME/FM Action Network's position on this, but I don't think it's necessary for me to do so for this thread to continue discussing the rest of the response to the IOM report.

 

[alex3619]

I had to delete a post because of a forum glitch, something really weird. So I will get to the main points fast.

This is a US document, for US purposes. There is some responsibility to consider international impact, but its not core to the purpose, nor is the US responsible for what other countries do or do not do.

A very small number of countries are engaged in this, and total government funding is miniscule overall. I wonder if Japanese government funding is even higher than the US, does anyone know? Much of the funding is from private philanthropy as well. There is a dearth of researchers who are interested, and they tend to cluster in a small number of countries.

I think the country list goes like this, but this is both government and private funding, not just government:

US, Japan, UK, Australia, Norway, New Zealand, Canada, Spain.

I am sure I missed a few, and there are scattered papers from all over the world. While we can argue that the contribution from some governments of countries of this list is small (Spain appears dismal for example), that is made up for in part by a small number of dedicated people who managed to produce interesting papers despite the lack of interest. I include the CCC in this.

Where are the other countries? This disease has no borders, and has severe economic impact worldwide. The total global cost is probably on the order of a hundred billion US dollars, though nobody has tried to calculate that. This of course misses the point that its not just dollars, its the individual contribution all these patients might have made to create a better world. Further there is a huge social burden as well and its hard to put a dollar number on.

Over the years the US has done most of the research, and despite the weirdness in the UK its pretty good too. Japan is the only country that tried to have a systematic research program recently, though the US used to have Centers of Excellence before they were abandoned. I think its too soon to be sure the CDC has taken up systematic research ... is the current multisite study a trend or an anomaly?

Much of the burden also falls on philanthropy. So it happens where the money and interest are, and that is sporadic.

I find myself on the one hand unhappy with the flawed IOM process, on the other hand applauding the panel for making a workable report under difficult circumstances, and using a Motie reference (Niven and Pournelle), on the gripping hand I think we can use the report, despite any perceived flaws, to leverage interest internationally.

 

[alex3619]

On studying the definition before rolling it out, I agree this needs to be done. I have been saying so for a while. It is not however the role of the IOM nor the panel. It should have been part of the terms of reference, which is a mistake made by HHS, but then again the IOM is not a body that can do this. It is entirely possible though that the next step might be a study to examine the validity of the SEID definition.

I would also like to point out that NO definition has ever been properly validated from the start. Some are still not validated (Oxford, who said anything about Oxford?). The research tends to progress, haltingly, in pieces.

 

[Gamboa]

I'm going to take the middle road here and agree with everyone.

I live in Canada and agree with Kati that virtually no one here has a clue what the CCC is ( medical doctors, naturopaths, nurse practitioners, chiropractors etc).Technically, on paper, Canada recognizes ME/CFS as a disease but the reality is that we aren't much better off than the UK and the US in that it is thought by many (most?) to be a somatic disorder. Our only hope is the research that goes on in the rest of the world.

I also agree that non-US citizens should not be criticizing ( or at least not too much) the IOM report. I am extremely grateful to the US for doing this, whether I like every aspect of it or not. Sure I can criticize bits and pieces of it, but overall it has done a huge service to all of us around the world. I have found a lot of the severe criticism, especially from some of the UK ME folks, very disturbing. As if they have things under control over there. ( I can say this, I hope, since I am also a British citizen, despite living in Canada).

Plus, like it or not, the US is a world leader in just about everything and ME/CFS is one of those things. I applaud that and thank the US citizens for using their tax dollars for something that benefits ME and me.

 

[Ember]

Sweeping statements and protestations of political correctness don't define the country in which I live. Certainly the US has no corner on neighbourly behaviour. I'll thank no one for CFS or for the SEID criteria. And neither should the National ME/FM Action Network.

I'm grateful to both the Canadian government for the CCC and the BC government for its Complex Chronic Diseases Program. I'm also grateful to the International Consensus Panel of experts for defining ME and developing our ME Primer outside any organization and without any financial or other assistance or sponsorship.

 

[Ember]

That doesn't sound like they meant that individual countries shouldn't make their own definitions, just that they thought the US should have taken international input on what is an internal process.... Clearly, I don't understand The ME/FM Action Network's position on this....

Have you read the critique by the National ME/FM Action Network, @SOC? Where do you find there the criticism that you consider so offensive?