Poll: Is it worth risking staying with CFS/Fukuda to have a chance of getting ME/CCC/ICC?

[Sasha]

There has been a lot of discussion of the pros and cons of the IOM report since it came out on 10 February.

The report has proved divisive: some patients have called for the report to be rejected, others want it modified, others welcome it with few reservations. I suspect we're on a continuum rather than in two camps.

Some anti-IOM-report patients have started petitions calling for the report's rejection and the adoption of ME and the CCC/ICC, but other patients are concerned that if the report is rejected, ME/CCC/ICC won't be adopted instead and the CFS name and the Fukuda criteria will remain.

Is it worth risking staying with CFS/Fukuda to have a chance of getting ME/CCC/ICC?

Have your say...

 

[zzz]

I think that, knowing the way politics works, we will be very lucky indeed if the IOM report is adopted in full and the recommendations for funding are followed. And the reaction of the Wessely School to this report couldn't make it more clear that they see this as a direct threat to their entire approach - which it is. The IOM report also specifically opens the door to further revisions over the next few years as the evidence warrants. What more can we realistically expect?

I think that there is exactly zero chance of getting ME/CCC/ICC at this point, and that efforts in this direction may simply give the NIH an excuse to hold off on doing anything.

 

[Sidereal]

CCC/ICC will never be adopted anyway so there's no point in opposing IOM. The only two actual choices on the table are shitty Fukuda criteria or less shitty IOM criteria.

 

[wdb]

I don't follow the reasoning, IOM is closer to CCC than Fukuda, rejecting IOM doesn't help the cause to adopt CCC it just takes us back where we were which is further away from CCC.

 

[alex3619]

I suspect we're on a continuum rather than in two camps.

I don't even know its a continuum. There are so many issues and opportunities that its like a huge n-dimensional puzzle, and where people are drawing the line often appears to be based on their own primary concerns.

I am very much concerned we are fighting yesteryears battles that are now superseded for the most part.

In other words, its a mess.

This is not surprising to me. The lack of adequate consultation with community at every stage of the process, especially before it even got to the IOM, is almost guaranteed to create this situation.

A cynic might say that this is probably what was wanted all along. Divide the community and they don't have to address any issues as advocacy will self destruct.

That does not, however, tell us how to fix the problems.

I currently hold there are three broad separations of issues.

1. The process of how we got here. That process is deeply flawed, and reeks of ineptitude.

2. The IOM report itself. It has failings, but also successes and opportunities. Its not either/or on almost any criteria, and while its problematic to simply adopt it all, its also problematic to simply reject it all.

3. What advocacy is going to do about all this is yet another question. Some issues are currently irreconcilable, and there will be no united voice. Other issues almost everyone agrees on. If we can separate the two lists, with maybe some issues in between that are muddled, then we will have action points on those things everyone agrees on.

I would like to suggest that letters or petitions stick to one central point. When letters and petitions cover dozens of points that are not intrinsically tied together, then most will reject them because while they might agree with some of the points, they will disagree with the remainder.

Let me make a point I think most of us agree on: the patient community needs to be consulted in every stage of these processes. We are stakeholders, and our lives are dependent on these processes. That means a wide and diverse public input.

Furthermore, while forums or organizations might be used to facilitate this communication, no single forum or group represents the entire patient community.

 

[snowathlete]

I've changes my signature to make my life a lot easier.

 

[aimossy]

I'm just posting some of my own general personal feelings.

ME - CFS - SEID, none of these names have been taken seriously and I don't think any name will be until there is robust pathophysiological findings, I personally don't like any of these names. I think that by the time SEID could be reviewed to be accepted as the name by the powers that be, research will likely have made it obsolete.

It is already possibly obsolete, because at least two papers have already come out adding more interest in the area of brain abnormality and robust evidence of immune abnormality. The IOM only reviewed papers until April 2014 ( that date could be wrong ) and we have some even more important research to come out soon. Putting efforts into this area I think would cost a lot of energy and still leave us messy and I feel is a less priority issue at the moment.

Doctors across the board don't use CCC or ICC or anything else to diagnose the illness and these criteria were problematic and unused and didn't come from a health authority. Doctors are barely diagnosing this illness at all and it needed to be clearer and more spelled out. The statistics for the amount of people undiagnosed is extremely bad and I feel seriously problematic for our whole cause.

If we don't find something that forces the issue with doctors to diagnose and makes it easier for them to recognise, at the same time as starting to get them more educated - we will be staying stuck in our black hole, with a horrendous amount of undiagnosed people and continuing ignorance from doctors.

The IOM reviewed research on the illness ME/CFS and came up with some consensus and recommendations to build from. This criteria as I understand it is a clinical criteria not a research criteria, they will have to be tighter in the research criteria for comorbidities like most research in many illnesses has to be and that will need worked on. I feel we can't get more fine tuned about this illness until we actually get more people diagnosed and more work and research done on ME/CFS patients.

I don't think the IOM report is perfect, but it is a building block to hopefully force the issue of diagnosing and a chance to educate doctors further. Two very important parts of our global problem that need changed in order to get further from there. We can leverage their statements for our benefit in advocating and lobbying as well around paucity of research and the seriousness of this illness.

I don't have any problem with ME Advocacy and their supporters having a differing view to my own and I personally won't come down on their efforts. I am uncomfortable though with any language that suggests their view as being that of the majority of patients especially because of the messy arena we have. I am also uncomfortable with any active campaign to undermine efforts for awareness or advocacy that may fit in line with others differing views to theirs. I just don't think that helps our general cause together and undermines advocacy efforts on the whole and defeats any possible gains in the big picture for all of us.

 

[alex3619]

ME - CFS - SEID, none of these names have been taken seriously and I don't think any name will be until there is pathophysiological findings, I personally don't like any of the names. I think that by the time SEID could be reviewed to be accepted as a the name by the powers that be, research will likely make it an obsolete.

Yes. I wrote a blog saying so years ago. No name counts until we know what we are dealing with - that means the science is nailed down, including replication and widespread agreement.

Doctors across the board don't use CCC or ICC or anything else to diagnose the illness and these criteria were problematic and unused and didn't come from a health authority. Doctors are barely diagnosing this illness at all and it needed to be clearer more spelled out. The statistics for the amount of people undiagnosed is extremely bad and I feel seriously problematic for our whole cause.

I read a commentary from a doctor recently, and I don't recall where, that doctors often don't formally use definitions. We also know that in over a decade its a very rare doctor who uses the CCC. Getting doctors to use existing definitions and research has failed. I am guesstimating the misdiagnosis rate in parts of Europe is around 70%, based both on the Irish 70 odd percent claim and the UK 40 odd percent claim using a diagnostic criteria that Jason found was often wrong about 60% of the time.

Mostly doctors wont care about SEID. Or about ME. If you say ME they often translate it to chronic fatigue, without the syndrome bit.

This is about failings in doctor education. Without addressing that there is little chance of change. If the CDC toolkit does not get rid of the bad educational material, then in the US at least there is a huge barrier to change.

The number one thing we need is money for research. Number two is to have the research going to good science. Number three is, I would suggest, doctor education. The IOM report at least makes recommendations toward that goal, and is the only thing aside from the CDC that has a chance of pulling it off. Years of CCC and ICC promotion have failed.

This criteria as I understand it is a clinical criteria not a research criteria, they will have to be tighter in the research criteria for comorbidities like most research in many illnesses has to be and that will need worked on.

This criteria will undoubtedly be used for research, but I suspect researchers will use CCC as well, and maybe ICC. Furthermore without a separate research criteria the additional criteria used will differ study by study, meaning that comparison becomes problematic. That is actually the case already though.

I don't think the IOM report is perfect, but it is a building block to hopefully force the issue of diagnosing and a chance to educate doctors further. Two very important parts of our global problem that need changed in order to get further from there. We can leverage their statements for our benefit as a whole as well around paucity of research.

The IOM report is a tool, and could be used to our detriment or gain. Like all tools it needs to be used appropriately.

The process that led to it is a dangerous practice in medical bureaucracy. Its not that the theory of EBM is fatally flawed, its that its easy to get it biased and manipulated, moving it right out of science into management and politics.

I wonder if this discussion should be in another thread.

I cannot answer the poll as it stands, because my answer is not subject to a simple yes or no.

 

[aimossy]

I agree with your priority list of main areas and the 1 - 2 - 3 punch @alex3619

This criteria will undoubtedly be used for research, but I suspect researchers will use CCC as well, and maybe ICC. Furthermore without a separate research criteria the additional criteria used will differ study by study, meaning that comparison becomes problematic. That is actually the case already though.

I thought it would mean that they would also use this as research criteria, but I thought they would have to tighten/tweak it in many aspects including comorbidity and dual diagnosis, basically working on a research version of the criteria. Research seems to be starting to use CCC with Fukuda now for screening and some even using De Paul questionnaire as well.

So you think they would definitely use the IOM criteria then and add in CCC screening and De Paul maybe. So they wouldn't need to make a IOM research version? I would be ok with this scenario for research I think. We do already have difficulty with comparisons from study to study.

 

[alex3619]

I think researchers will most likely start adopting SEID in conjunction with CCC, and with other developments being worked on right now that will influence this, such as the multisite study. I reserve the right to criticize all of it though, based on its merits.

What I most hope for is a validated and reliable biomarker. Then this diagnostic muddle can be dispensed with.

PS. Unless HHS rejects SEID, in which case we are stuck with Fukuda for some more years. In which case I think researchers will move to Fukuda with mandatory PEM, and to CCC. We have almost zero influence over this though. We will then also lose doctor education possibilities. We will still be able to use the report to push for more research though.

 

[Ember]

A leading poll question serves to invalidate the results.