IOM List of Provisional Committee Members has been posted 3 Dec 2013

Exclusionary testing costs money. Its why in the UK once CFS is thought likely testing tends to stop, and once they are convinced of a diagnosis of CFS testing does stop. Many diseases are missed as a result of this, from differential diagnoses to comorbidities.

I'm not 100% happy with the panel as it is, but there are some names on there that are a good start.

As a general comment, keep in mind that in the ideal we probably don't actually want a panel of only ME experts, unless they also happen to be experts in creating diagnosis documents that doctors find easy to use and are happy to embrace. We may need some others on there who bring that to the table, provided they are sympathetic to the cause and willing to bow to the true experts in terms of content. The problem is in trying to guess in advance who would be sympathetic that way and who might be misguided.

The CCC is a really good diagnosis criteria in many ways, but it isn't perfect. And overwhelmingly the response from other doctors has been that the document itself was too long and not doctor-friendly enough. I'm not sure how easy it will be to get that kind of precision when we're dealing with a very complex and varied illness, but it's worth a try. The best criteria in the world won't help us if doctors on the front lines won't actually use it.

I'm not saying that I'm pleased the IOM contract is going through, just pointing out that if it does, experts only on the panel might not actually be our best bet for a good outcome. That said, we only need so many outsiders, and a few of the names on that list aren't striking me well.

You're referring to the diagnostic accuracy of which definition(s)?

Its not about the definitions but its about the lack of investigation that doctors do. I've only glanced at various definitions but they are not robust about other things to investigate as they rely on the doctors skills to look for other causes. Maybe its a view on UK doctors who just jump to a conclusion and don't think past it.

The definition mandates the investigation. Consider, for example, the ICC and CCC exclusions:

Excusions (ICC): Primary psychiatric disorders, somatoform disorder, substance abuse & paediatric 'primary' school phobia.

Exclusions (CCC): Addison's disease, Cushing's Syndrome, hypothyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes melitus, and cancer...treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.

The less restrictive the definition, the greater the need to investigate exclusions.

The ME/CFS primer has a list of exclusionary illnesses on p. 14.

I don't think that we need to spend a million dollars to re-invent what we already have. HHS could have just adopted and disseminated the primer as CFSAC voting members have been asking them to do.

What is the difference between the panel who put together the primer and the IOM panel?

From what I see of doctors they need more than a list of diseases to exclude but a series of tests to run relating to different symptoms along with the possible diseases that they indicate. Maybe its just because I have a very low opinion of the competence of many doctors. I know we had to read the list of blood tests included in the NICE guidelines to a consultant to get them to even do simple basic things such as U&Es. So perhaps guidelines need to be written in terms patients can discuss with doctors and tick off what has been done.

I think the papers on misdiagnosis were from the UK and primary psychiatric disorders and sleep disorders were the two most common things misdiagnosed.

There is a deeper psychological reason for ensuring exclusion criteria and tests are clear. Most decisions are made based on the what is currently in the decision makers mind. This is the reason behind check lists and processes what they do is make sure other thoughts are framed in the mind prior to a decision and hence make sure the decision maker has considered many factors rather than just what happened to be in their mind at the time (often based on recent history).

Have you glanced at the Personalized Clinical Assessment & Diagnostic Worksheet for ME (pp. 10-12) or at the Clinical Evaluation of ME/CFS (pp. 7-9) and Tests for Abnormalities in ME/CFS (p. 18)? What investigative protocol is provided by the NICE guidance?

I looked about a year ago but can't remember much. But I will read as they could be very helpful since we're having doctor trouble at the moment.

NICE investigation guidelines are very poor they include a few basic blood tests and also refer to tests that shouldn't be done! Its a mark of how poor doctors are in the UK that they can't even do the most basic routine tests on a sick child and need to have a list read to them.

Through a tremendous group effort, we have posted detailed profiles of the seven panelists not previously known to the ME/CFS community. There's some good stuff and some bad stuff. But it is (I hope) thorough, well organized and accurate. More to come very soon!

http://www.occupycfs.com/2013/12/05/iom-panelists-the-unknowns/

Thanks for that. Just from what I've read, I think that you're a bit too positive on a couple of them.

Also, to me it sounds like you give unwarranted weight to their scientific credentials, when this is inevitably going to be a political rather than scientific project. Thanks to all those involved in this, but my view is that you may have focussed too much upon the less important aspects of their background.

I've not read enough of her work to be sure, but to me, Mulrow looks like exactly the sort of person I thought would end up on this committee, and exactly the sort of person who would be bad for patients.

I've been reading some of that brain injury IOM report, and it's got a familiar feel to dodgy CFS stuff - vague non-recovery uses of the term 'recovery'; lack of real concern about response bias in non-blinded assessments; concern about the harm done by 'compensation-seeking behaviour' but not suggestions on how to ensure people receive compensation more readily and in a way the puts less strain upon them. All of the report that I read seemed to reflect a lack of concern with allowing medical practitioners to exert authority over the behaviour of patients based upon tenuous evidence, even if they were open about how poor a lot of the evidence was.

I've not carefully read the report, and do not have much confidence in my understanding of this area, but to pull out something relevant to CFS, and imo, worrying:

Despite having said:

In their conclusion they describe this for ideal study design:

Waiting list or UC control groups really aren't an ideal way of accounting for the biases which occur in trials. It looks like they could easily end up with a range of worthless placebo interventions competing with one another on the assumption that they are all superior to no treatment.

A real potential problem for us is that those on the panel will see 'medical care' as necessarily being a good thing, and especially lovely talking/behavioural therapies - what harm could they do? I want to see a report which is committed to hacking back the claimed expertise of some, and recognising that medical claims should not be made to patients unless they are supported by truly compelling evidence. Something similar to the brain injury report would probably be terrible for us. It's also similar to the old CFS report Mulrow was involved in.

I'm not saying that she's definitely a baddie, but the work of hers I've read reminds me of a lot of what I think is bad about a lot of CFS work, and why I was so concerned about the IOM contract in the first place.

Edit: even though I mentioned it a couple of times, I felt I should reiterate that I am not well informed about brain injury rehabilitation (although do have some interest in this area). I was reading the brain injury report and thinking 'if a similar approach were taken with CFS, would we be in trouble?'. I thought we would be, but it could be that there are reasons why the approach taken is reasonable for brain injury, and not for CFS, and I am just not aware of these reasons.

Definitions might describe exclusions and differential diagnoses, but doctors often ignore those particularly when you have agencies like NICE telling them not to test, and insurance companies telling them not to test. Its the insurers and advisory agencies who have the biggest impact, and are angling to have almost the only impact.

Let me tell you about a conscientious doctor, who was my doctor. He ran a lot of tests to try to see if there was a differential diagnosis. He did this with all CFS patients (it wasn't an ME definition he was using in 1993). The result? He got fined by our insurance watchdog for doing too many tests, and almost got put out of business. To this day his settlement with them prohibits him from diagnosing or treating CFS.

That is what we are fighting in addition to the science.

Currently in Australia doctors have to be able to justify why they run a test - symptoms, signs, indicators, prior tests etc. An ME diagnosis doesn't cut it, nor does a CFS diagnosis. There are specified ranges of diagnosis, symptoms and test results that must be fulfilled before a doctor can run a test and not have to worry about sanction.

When the bean counters are in charge of medicine then doctors have minimal autonomy.

I agree with a large part of what you said, @Esther12 . This first post was mostly compiling what information people found (I didn't do much), and a later post will pontificate.

It is similar in the US; tests, especially expensive ones have to be justified and may be subject to a hierarchy: xray before MRI even if the doc has no expectation xray will show what is wrong.

This has serious ethical implications even beyond wasted money with energy costs fot the patient, wasted time which could mean deterioration, and in some cases unnecessary ionizing radiation.

Which definition(s) are Australian doctors allowed to use?

We typically use the Australian definition, its a hybrid between Fukuda and Oxford, and created in an even worse process than Holmes or Fukuda. It does include exclusionary testing, which tends to be ignored. Doctors do not follow the protocol, and so the misdiagnosis rate here is probably huge.

I don't think the protocol is mandated, its the tests and what drugs can be used that are more restricted.

Are these ME/CFS Guidelines used in Australia? They don't include any investigative protocol!

Those are the official guidelines, but I do not know how prevalent its use is. Some of our ME docs use other criteria.

In my experience most doctors here don't use testing protocols. They listen to symptoms, come up with a few ideas, and then quit when they don't pan out.

If protocols are not used its like they don't exist. Most tests I have done aside from my ME docs are because I asked for it.

Most doctors would consider those guidelines as specifying the exclusionary diagnoses, and then that they have the competence to do so. That is their protocol.

I regard the Australian definition as halfway between Oxford and Fukuda. Its not the worst out there, but its not even OK.

Those official guidelines include a modified tick chart of the Canadian Clinical Criteria (pages 5 and 14) and recommend that it be used in the initial consultation to assist with a possible diagnosis of ME/CFS. But they leave out both the “Clinical Evaluation of ME/CFS” and the “Tests for Abnormalities in ME/CFS.”

@jspotila (or anybody else)
Sorry if I missed it, but is there any comparable information about the IOM previously changing any committee membership?