Now that CFSAC's over, what should we do?

[Ember]

1. Promote biomedical ME and CFS research. This obviously includes supporting the best definition, which for now appears to be the ICC.

This is precisely what we're not doing. Our patient groups have contradicted the ICC in the documents they've submitted to the NCHS, Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee. The IACFS/ME doesn't even include the ICC in its list of case definitions.

 

[Bob]

If the CDC ... simply hired some expert diagnosticians to write a complete step by step guide for testing that included all the tests for all the conditions, and it was made mandatory for all patients to have this testing before having a CFS diagnosis, It would help hundreds of thousands of people get their correct diagnosis and treatment...

Maybe this could be a CFSAC recommendation?

i.e. that the CDC should draw up a diagnostic plan for potential CFS patients whereby all other possible illness are ruled out, along with the range of tests needed.

 

[Ember]

The (only) consensus that we reached in our discussions was that the CCC and the ICC should be used for all research. At the very least, this would give us research results for alternatively defined patient cohorts, using more selective criteria. (Note that some people wanted to make it clear that CCC only selects for 'CFS' and not 'ME'.)

The authors of the CCC wouldn't agree with "some people" whom you note. Marj van de Sande reminds us that the 'CFS' in 'ME/CFS' was included for strategic rather than for medical reasons:

The draft of the Canadian Consensus Criteria (CCC) used the name “myalgic encephalomyelitis” (ME). However, we changed it to ME/CFS because a member of the panel felt that some American patients were not familiar with the name ‘ME’. At the time we did the CCC, we didn’t have plans to do another definition in the future. In retrospect, it did serve as a good transition period.

 

[Bob]

Patients have never been involved in writing definitions for any illness in the history of medicine, and nor should they be, for the simple reason that the patients are not medically or scientifically qualified to do this and it should be left to the experts to do. (by experts I mean the experts in ME not the CDC).

I acknowledge what you say about the CDC creating a meaningless diagnostic criteria, but I think it's helpful for patients to be involved in the CDC's process, because otherwise the powerful psychiatric lobby may have undue influence. Patients can't create the definition, but they can help to direct the CDC towards appropriate evidence.

It will be nightmare scenario if the CDC creates a new Hybrid ME/CFS definition, it will be used instead of the ICC and ME will continue to be ignored and if the patient community supports the CDC in doing this they will only have themselves to blame when a cure isn’t found for them and they continue to suffer.

There's a difference between 'support' and trying to 'influence'. Sure, the CDC's new criteria might be useless, but patients and advocates can try to make sure it's a more appropriate set of criteria.
But whatever the CDC comes up with, it's important to note that it's still possible to use Fukuda, or the new CDC criteria, alongside the CCC and the ICC in research.
This would bring the research results that you want.

Effort at PR consensus have been totally derailed primary by efforts to keep the patient community united. But also because the only consensus that will be backed by the leadership of this site is the one that agrees with them, despite the fact that their views are totally at odds with the ICC and the majority of the researchers in this field.

Maybe, instead of us all getting caught up in the differences between CFS and ME, we should just focus on the diagnostic criteria, and get those used for research. I think that's the most important thing to do, and the rest will fall into place as the research results start coming in.

So again, I suggest focusing on what we can all agree on, rather than what we can't.

Another point that I have noticed since the ICC has been published is that a lot of people are not understanding how the scientific process works, in that when the authors of one work on a subject publish a new work on the same subject, the new work supersedes the old work and the old work is redundant and not to be used. The principle authors of the ICC are the Principle authors of the CCC. Therefore the ICC replaces the CCC and it is not to be used because it is out of date. The authors of the ICC are saying that the CCC is wrong because it combined ME and CFS to create ME/CFS, they are now saying that ME and CFS are different, so therefore the term ME/CFS no longer exists according to the creators of it, and should not be being used by anyone.

In practical terms, it's not as simple as that.
The CCC is now in common use in CFS research, and it might be beneficial for CFS research to use this more selective criteria.
So for scientific continuity, the CCC should be continued to be used, so that results can be compared across different reserach papers.
But that doesn't mean the that ICC shouldn't be used in all new research as well.
I personally believe that the CFSAC should be recommending that both the CCC and the ICC be used in all future government funded research.

We need to be asking for what has always been needed for the CDC to [...] recognize ME as a separate disease, and for the ICC [...] to be accepted as the definition for it

From my experience in discussions, it will be impossible to reach a community consensus on that within the wider CFS/ME community (esp in clinical terms rather than research terms)... And the CDC will obviously only be interested in their own research and definitions... But if that's what you want then you should push for it, and provide all the evidence to the CFSAC, or whoever you think might be receptive.

But again, I come back to my earlier point that if you want an easy route towards your goal, then using the ICC for all future research, seems like an obvious place to start, because that's something that the whole community will probably be able to agree on. And it will also bring you/us the scientific research results that you/we need and desire. Official separation of 'CFS' and 'ME' may follow sometime in the future, as the research results (based on the various different diagnostic criteria) bring in more and more evidence.

 

[Bob]

The (only) consensus that we reached in our discussions was that the CCC and the ICC should be used for all research. At the very least, this would give us research results for alternatively defined patient cohorts, using more selective criteria. (Note that some people wanted to make it clear that CCC only selects for 'CFS' and not 'ME'.)

The authors of the CCC wouldn't agree with "some people" whom you note. Marj van de Sande reminds us that the 'CFS' in 'ME/CFS' was included for strategic rather than for medical reasons:

The draft of the Canadian Consensus Criteria (CCC) used the name “myalgic encephalomyelitis” (ME). However, we changed it to ME/CFS because a member of the panel felt that some American patients were not familiar with the name ‘ME’. At the time we did the CCC, we didn’t have plans to do another definition in the future. In retrospect, it did serve as a good transition period.

Thanks, it was bad wording. I've changed the wording in my post.

 

[Ember]

But again, I come back to my earlier point that if you want an easy route towards your goal, then using the ICC for all future research, seems like an obvious place to start, because that's something that the whole community will probably be able to agree on. And it will also bring you/us the scientific research results that you/we need and desire. Official separation of 'CFS' and 'ME' may follow sometime in the future, as the research results (based on the various different diagnostic criteria) bring in more and more evidence.

I don't see how your “easy route” could work. We lose credibility if we press for using the ICC for all future research, but contradict it at the same time. Take the NCHS example. The NCHS won't simply take the word of the Coalitiion4ME/CFS when they consider reclassification. The Coalition claims that the ICC supports their position, but it doesn't. That contradiction both damages the Coalition's credibility and separates us from the scientific community.

The CDC's new criteria may turn out to be worse than useless. Unfortunately, the confused strategy that patients and advocates are currently using undermines any ability we might have to make sure it's a more appropriate set of criteria.

 

[usedtobeperkytina]

Seems clear to me that "it" is a disease that is an endpoint of multiple possible triggers, all of which seem to be challenges to the immune system. "It" can come on gradually or suddenly. In the clinical care, treatment is the same because the endpoint, "it," the disease is the same whether it is sudden or gradual. There are variations and seeming stages and levels of severity. But the multi-system dysfunction is the disease. In fact, that is why some embrace neuro-endocrine-immune disease as a good term, the one that was suggested from the CFSAC's Name Workgroup a few years ago.

This is very similar to breast cancer. You can have a mild case. You can have a more severe case. First, they see whether it is benign or malignant. Then they measure it based on whether it is in lymph nodes and if so, how many. And they classify it according to whether it has metastasized. They also look to see how quickly it is growing (replicating). They separate it according to whether it is estrogen sensitive. I know all of this because my mother had breast cancer.

So, it is one disease with one name: breast cancer. But there are stages and many variables. These will affect treatments: surgery, radiation, estrogen depletion, chemo and more. It doesn't matter what the cause or trigger (no one knows for sure). The end result is seen as one disease, but with variables that will affect treatment, including severity levels.

I say "it," our disease, is the same. We all have the same thing, only we have two names for it and multiple criterias. (I notice no one is talking about Jason's paper suggesting a criteria that he put out last year.) And to be honest, "ME" and "CFS" are both bad names for the disease now. They have been tainted by bias. We need a new name.

The problem with this, is again, the lack of a biomarker. Breast cancer has a biomarker, no matter the trigger or severity or particular differences in that cancer. So the name and diagnostic criteria follows the biomarker. However, for treatments, they look at the subgroups of breast cancer to see what types would respond to different treatments.

While we don't have a biomarker, it doesn't mean we have different diseases. Because we have different levels of severity, it doesn't mean we have different disease. Because we have variables in symptoms or even biological manifestations doesn't mean we have different diseases. Another good example is MS. Everyone's is different.

The CFS term and criteria was made to describe the people in the Nevada outbreak. Do any suggest that that outbreak is a different disease than the ME of UK in the 50s? Of course not. It is the same disease. Because there are multiple man-made criteria, doesn't mean there are different diseases. The disease does not change based on man's labeling or criteria for it. One disease, but with variables and subgroups which are useful for treatment and research, but not for diagnosis. Just like breast cancer. Just like MS. Just like lung cancer. Just like diabetes.

This is why the CFSAC members suggested a clinical diagnostic criteria (lumping all together) and research criteria (which will be much more narrow so as to find the common denominator, or biomarker). Dr. Klimas said this is the way AIDS was done. The research criteria in the beginning, when they were looking for the biomarker and the cause, was very narrow. Gay men, of certain age, etc.

This is just my opinion, but I think the CFSAC should recommend the CDC or NIH come up with a research criteria and the CDC come up with a clinical criteria. They already are working with 7 respected experts. If they listen to them, I trust it will be a good one. That is the key point, if they listen to them. But I think, as multiple CFSAC members said, they should not be coming up with just one, they should come up with two. The clinical one is broad. The research one is narrow.

But, I do think both definitions should be specific enough to not be confused with depression or deconditioning. It doesn't help to have a diagnostic criteria that could include depression as that would lead to misdiagnosis and inappropriate treatments.

Tina

 

[Bob]

I don't see how your “easy route” could work. We lose credibility if we press for using the ICC for all future research, but contradict it at the same time. Take the NCHS example. The NCHS won't simply take the word of the Coalitiion4ME/CFS when they consider reclassification. The Coalition claims that the ICC supports their position, but it doesn't. That contradiction both damages the Coalition's credibility and separates us from the scientific community.

The CDC's new criteria may turn out to be worse than useless. Unfortunately, the confused strategy that patients and advocates are currently using undermines any ability we might have to make sure it's a more appropriate set of criteria.

By 'easy route', I was just referring to focusing on issues that we can all agree on, specifically in relation to the CFSAC.

And, in my opinion, once research that is based on the ICC, starts bringing in research evidence about the ICC cohort, then all the other disagreements will disappear, because there will be a stronger evidence base. If the ongoing evidence backs up your position, and the ICC authors' statements, then there won't be any further disagreements, because the evidence will be there for everyone to see.
And patients will be appropriately treated as per the cohort that they fit into.
So, whatever the CDC comes up with, as long as the CCC and ICC are being used alongside in research, then these definitions will hopefully bring us meaningful research results.

In broader terms, of course there is room for improvement in most aspects of CFS and ME policy, but I'm not sure if this particular thread will be the most productive place to have extensive discussions about all the detailed aspects of CFS/ME.

So, again, I suggest that it might be more productive to focus on what we can agree on, in terms of what we push for with the CFSAC. (This is just my 'suggestion', and I'm not trying to tell people what to discuss.)

 

[Bob]

usedtobeperkytina,

I agree with what you said about a broad clinicial definition, and a narrow research definition, but some won't.

The point that some people are making is that ME, as defined by ICC, is a distinct disease, whereas CFS is a collection of undefined or undiagnosed illnesses. So they would not agree that it is just one illness, and they do not want to see the two (CFS and ME) lumped together under one umbrella term.

With regards to the CDC, the problem is that nobody trusts them to come up with anything meaningful...
But even if they really are approaching it rigorously, and without bias, this time, some people are saying that they will create a loose definition that encompasses different illnesses (specifically 'CFS' and 'ME'), because they are using a loose definition of disease to gather their evidence, so it will still be meaningless.

Definitions and names are very controversial issues, and many people have very strong and often opposing views about them.

 

[Ember]

By 'easy route', I was just referring to focusing on issues that we can all agree on, specifically in relation to the CFSAC.

You say, Bob, that “the (only) consensus that we reached in our discussions was that the CCC and the ICC should be used for all research.” How can we effectively act on our only consensus if we also choose to contradict the ICC in our communication with the NCHS, Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee?

 

[Bob]

You say, Bob, that “the (only) consensus that we reached in our discussions was that the CCC and the ICC should be used for all research.” How can we effectively act on our only consensus if we also choose to contradict the ICC in our communication with the NCHS, Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee?

I don't see why it is necessary to agree that 'ME' and 'CFS' are the same or different, in order to recommend using the ICC for research?

 

[alex3619]

Its all about the methodology. I can see the CDC producing a new definition that is either so broad and useless that it is a waste of time and money, or finally defining patient groups the way they should have been defined all along. There are two questions. The second is how do we make sure we get the best definition we can? The question that I am still not sure is answered is should we even try? The CCC is fast becoming a de facto standard in research. The ICC still has to prove itself, but its about time some started using it. Why go back and reinvent the wheel without adequate cause, especially since so much new research is coming in? Whatever definition is created will probably exist based on the available tecnology at or near the start of the study. Things are progressing so rapidly that it may be obsolete before its finished.

I am starting to not buy the argument that the CDC cannot adopt either the CCC or the ICC. (Lenny Jason's model is another issue, its been a long time since I looked at it so I cannot comment accurately.) Sure, they cannot accept either. So what? The real question is which is faster and more efficient, particularly with limited funds: investigating existing best definitions to determine which should be used, or starting from scratch to create whole new definitions? They could, if they wanted to, simply run some studies to validate or invalidate the CCC or the ICC. If they can be validated to CDC standards then we would have shortcut years of definition development.

We are also probably misguided in thinking we need the CDC onside in accepting a new definition. If the research world (barring the CDC and psychologizers) adopt either CCC or ICC (or Lenny's) then the CDC will have the choice to move forward or remain as disconnected and useless as they have been for the last decade. That might get their attention.

I also think it might be misquided in thinking we need medical colleges and other medical stakeholders onboard initially. Get the definition, validate, then enrol these medical authorities in an addition study for further validation. Let them see a complete and up to date model in action.

Bye, Alex

 

[Bob]

I notice no one is talking about Jason's paper suggesting a criteria that he put out last year.

I'm waiting to find out what paper, of Jason's, the members of CFSAC were referring to.
Does anybody know?

 

[Ember]

Definitions and names are very controversial issues, and many people have very strong and often opposing views about them.

Definitions and names have serious consequences. Some CFS patients may benefit from GET. GET is contraindicated for ME patients.

 

[Ember]

The real question is which is faster and more efficient, particularly with limited funds: investigating existing best definitions to determine which should be used, or starting from scratch to create whole new definitions? They could, if they wanted to, simply run some studies to validate or invalidate the CCC or the ICC.

The CDC has decided to create its own definition. There could be an agenda here. As for being misguided in thinking we need the CDC onside to get a new definition accepted.... We've had the CCC now for 10 years. We need the CDC to stop its obstruction.

 

[firefly]

Its all about the methodology.

The real question is which is faster and more efficient, particularly with limited funds: investigating existing best definitions to determine which should be used, or starting from scratch to create whole new definitions? They could, if they wanted to, simply run some studies to validate or invalidate the CCC or the ICC. If they can be validated to CDC standards then we would have shortcut years of definition development.

We are also probably misguided in thinking we need the CDC onside in accepting a new definition. If the research world (barring the CDC and psychologizers) adopt either CCC or ICC (or Lenny's) then the CDC will have the choice to move forward or remain as disconnected and useless as they have been for the last decade. That might get their attention.

I also think it might be misquided in thinking we need medical colleges and other medical stakeholders onboard initially. Get the definition, validate, then enrol these medical authorities in an addition study for further validation. Let them see a complete and up to date model in action.

Bye, Alex

YES!

 

[Ember]

I don't see why it is necessary to agree that 'ME' and 'CFS' are the same or different, in order to recommend using the ICC for research?

You really don't think it creates a problem for us when the NCHS, Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee learn that we're wrong in the way that we characterize the ICC? To whom are we recommending the ICC?

 

[Bob]

You really don't think it creates a problem for us when the NCHS, Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee learn that we're wrong in the way that we characterize the ICC? To whom are we recommending the ICC?

I think we can side-step some details (at least temporarily) in order to accomplish want we want to get done.
I understand that you want 'CFS' and 'ME' recognised in the same terms as the authors of the ICC define them.
But I'm not sure if you are going to get consensus for that in this discussion thread, and in the wider CFS/ME community?
And in any case, the research itself will address the details that you want addressing, once the ICC is put into practise.
So that's why I keep coming back to suggesting that we focus on what we can all agree on.

 

[Ember]

I think we can side-step some details (at least temporarily) in order to accomplish want we want to get done.

The “detail” that you'd like to side-step (at least temporarily) is unfortunately the main thrust of the document. We haven't side-stepped it; we've contradicted it. It's hard to accomplish your goals when you undermine your allies and your own credibility at the same time.

The discussion here, as I understand it, is about getting our main goal accomplished, not about waiting for the accomplished goal to resolve our differences for us.

 

[Bob]

The “detail” that you'd like to side-step (at least temporarily) is unfortunately the main thrust of the document. We haven't side-stepped it; we've contradicted it. It's hard to accomplish your goals when you undermine your allies and your own credibility at the same time.

Ignoring the names for a moment, the ICC defines an illness or disease which is, by definition, different to what Fukuda defines. The ICC, by definition, does your work for you, in separating ME (ICC) from CFS (Fukuda). So my own opinion is that this discussion does not need to be over rehearsed, if there isn't agreement. I think what we need to do, as a priority, is to get the ICC used, or it won't be of any use at all to anyone. I think that the point that you are focussing on could be a sticking point, but that it doesn't need to be agreed by everyone in order for us to move forwards.

But I might be wrong... Maybe you can convince everyone of your point of view.

If you want to promote your views about the difference between ME and CFS, then please carry on, but I predict that you won't get far, in terms of getting the rest of the community on board, until there has been further progress with the research.

Once the ICC have been established in research, then the evidence will speak for itself.

The discussion here, as I understand it, is about getting our main goal accomplished, not about waiting for the accomplished goal to resolve our differences for us.

I thought that the discussion here is about finding a consensus on what we want the CFSAC to acheive.
We are never going to resolve all of our differences, until further science and evidence does it for us.

Ember, my understanding is that you want everyone to agree, and declare publicly, that the ICC defines 'ME', and that 'ME' is different to 'CFS'. That's a perfectly legitimate opinion to have, but my main reservation is that it won't be a productive use of energy, as being demonstrated now in this thread, as it will take a long time to convince everyone, if you ever do.

Anyway, I'm dropping out of this conversation now, as it's becomming circular, and I've stated what my own opinions are.
I think it would be more productive to use this thread to find out what we all agree on, rather than repeatedly rehearsing the issues that we can't find common ground on.

Like Mark said, if we are going to take this forward, then we need to summarise the points that have been made, and see which ones we can all agree on.