Hi rlc, we need to be careful to not confuse the politics of ME with the science of ME.
Let me state very clearly three things before I start my analysis. First, I support the ICC. How could I do otherwise? Second, I support the IACFSME Primer as an interim measure till we have something better. Third I am anti-psychobabble, and am writing a book debunking it.
On the political front, many recognized CFS/ME "experts" like Simon Wessely would just argue we are cherry picking our researchers to support our conclusion. He would argue that ME has been recognized as a psychiatric disorder since 1970 and that most doctors agree with him. Technically this is a correct statement, largely by virtue of it ignoring the bulk of the science. We cannot just say people like SW are not experts without also having strong grounds to say so - we sound like fringe lunatics otherwise. This is political. We have to be very careful in keeping politics and science separate.
I intend to come back to politics later, because from a political perspective I agree with almost everything you are saying rlc, but not from a scientific perspective.
Scientific Perspective
Is ME a distinct disease entity? We don't know.
Are ME and CFS different? First, which CFS? In any case, we don't know.
Are all cases of CFS misdiagnosis? Some, maybe most (depending on diagnostic definitions), sure, but otherwise we don't know.
I think we should move strongly toward using the ICC definition or an enhanced ICC definition for research. There is however one exception. It is possible, though expensive, to study biomarkers from a broader perspective. There are good reasons for doing this. Ideally we need a well funded vigorous study on CF, that is without the S bit, looking at symptom and biomarker clustering. Specific disease entities should, if we get the science right, emerge out of that. If one of these matches ME exactly we have validated ME as a diagnostic entity. If however several distinct clusters match ME then we know ME is a category of disease, just as cancer is a category. Similarly if many who qualify for a CFS diagnosis but not ME have the same biomarkers, then they are an ME subgroup. Those who are diagnosed with CFS but do not have the ME biomarkers are then clearly in separate disease entity groups. Furthermore definitions like the Oxford CFS definition might be resoundingly disproved.
If a study is not looking at biomarkers in the above sense, then I think it should use ICC or a later enhanced version of ICC.
The science of ME should not, however, be limited to just biomarkers, diagnosis, treatments or cures. We need all that of course. I will get into the politics of that in a bit, but the other scientific need is to debunk the poor science - particularly psychobabble. If we adopt ME as a diagnostic entity worldwide, then the CBT/GET proponents will just say it doesn't matter, its just another name for a dysfunctional belief disorder (I usually refer to this as the Dysfunctional Belief Model or DBM). These researchers grab huge chunks of research funds, compete for publication with much better science, and actively discredit competing theories. There are also detrimental political issues arising from this. Their position needs to be resoundingly debunked.
Political Perspective
Clearly differentiating between ME and CFS as a political move is a step in the right direction, but its not enough by itself. It is far too idealistic to say this will fix things. I think it wont do much at all by itself. It would win a single battle but not the war. About the only good thing to come out of it is we will get rid of the F word.
Against this we have more political power as a larger group. Personally I think we should be pushing for neuro-immune diseases as a patient block, with an understanding that every disease entity within that needs its own research agenda and funding. As ME/CFS advocates, with a large patient base, we still do not have enough advocates to make a difference. ME advocates would have almost no power at all if we isolate ME patients from the wider group. I do agree however that we should get rid of the term ME/CFS except in describing old research. I have been saying "ME and CFS" for a long time now. This is not because I know for sure they are different, but because we don't know they are the same - we should not lose sight of that either.
The psychogenic proponents will always move to say ME is psychiatric. They did this with neurasthenia, turning a neurological definition into a psychiatric one. They did this with ME, successfully, a point that is overlooked by too many ME advocates. They did it again with CFS and by reaffirming diagnostic entities like neurasthenia and hysteria. They will just do it yet again with a new definition of ME. We must keep in mind that while we promote the science of ME we also need to counter the DBM. The DBM is a brake on all ME research. I know of cases where good research papers were rejected by reviewers on the grounds that "CFS is psychiatric, this study has no value."
Let me also point out that the adoption of DSM-V, which I think will probably go through without much change, will be a severe problem for us. You have a diagnosis of ME? No problem, but you also have a comorbid psychiatric disorder! The DSM-V says so. It will be widely viewed as over-riding claims like in ICC that ME is not psychogenic. We have a very big battle on our hands in the near future to show that the DSM-V is unfit for purpose with regard to neuro-immune disorders. Until we have both distinct validated biomarkers and a cure, a pure biomedical research agenda cannot counter this.
Most doctors think CFS is psychiatric. Most doctors who know of ME think ME is psychiatric. In both cases they are simply unaware of the science. The psychogenic view has been using such effective pursuasive rhetoric that the science has been overlooked. Fighting for decent ME biomedical research funding cannot ignore this issue. Its also about political will and patient treatment. If most of the bureaucrats think ME is psychiatric, then making any changes will be extremely hard. Similary the adoption of a psychogenic model for ME and CFS by most doctors leads to widespread mistreatment of patients. Its a huge problem.
Let me add that pushing for "consensus" views to be adopted risks playing right into the hands of the DBM and DSM-V proponents. After all, isn't the wider consensus that ME is psychiatric? We need to push the science, not consensus.
I am writing a blog on this, but from a strategic perspective we need four things:
1. Promote biomedical ME and CFS research. This obviously includes supporting the best definition, which for now appears to be the ICC.
2. Debunk psychogenic ME and CFS research. Stop psychobabble!
3. Support patients to receive proper medical care. This also means stopping medical abuse of patients.
4. Support treatment availability for not just ME but all neuro-immune diseases. Nobody should be left behind. This means that treatment either has to be covered by insurance or subsidized. Its far too expensive to society to have millions of disabled people with ME or similar diseases.
For long term gains, points 1 and 2 are the main ones. They are the accelerator and brake on progress. We need more pressure on the accelerator, and need to get the lead foot off the brake!
Goal 4 has to be our ultimate goal.
Downsides?
Are there any downsides to moving to a position of ME as a distinct research entity? I don't think so. If ME turns out to be just a subgroup of a wider disease entity, we still haven't lost anything. By tightening the definition we may get faster research results for lower cost, which can then be used to examine a wider arrange of neuro-immune diseases to see if they are applicable. If ME is several diseases then we could be in trouble though - which is why I have no problems with biomarker discovery using clustering methods.
Is there any downside to using ME as a distinct clinical diagnosis? Maybe. I do not think we can address the use of ME diagnostic critiria without also addressing the issues in diagnosing other neuro-immune diseases. Until we have definitive, validated and widely-accepted biomarker based diagnostic testing for ME then there are going to be problems.
Another issue we have is with exclusion conditions. I suspect that exclusion conditions have frequently been used to wrongly rule out a diagnosis of ME. I suspect ME promotes a range of comorbid conditions, and is more likely if you already have one of these conditions. However, these conditions are often used to exclude a diagnosis of ME. This is because a diagnosis of exclusion is problematic. I am almost certain that many who have been excluded from a diagnosis of ME actually have ME. How many? I don't know. We do not want to miss a diagnosis of ME, from a clinical but not research perspective, because someone has depression or type 2 diabetes or sleep apnoea. There has been very little discussion of this issue, its largely been overlooked.
For ME to be really useful as a clinical diagnostic entity we need diagnostic biomarkers. Only a biomedical research agenda can get these. We need to adopt ME as a research entity a lot more than we do as a clinical entity.
