Petition to ask government agencies adopt ICC

Hi guys,

Before the IOM took on its work with the report, 35 scientists wrote a letter proposing to use the CCC. This is also mentioned in the IOM report but I cannot find the source/the letter with the signatures. I would like to know which scientists signed the letter. Can anyone help me with this matter? Link to the source?

Does anyone of you know which Scientists Support the IOM clinical criteria? Is there any public source to find which quotes their support?

I posted it here because there is much discussion about ICC verus IOM/SEID.

Thank you
Miriam

 

The first letter had 35 but then it was reissued with 50 signatures

https://www.dropbox.com/s/o1re8sew18pzyaf/Case Definition Letter final 10-25-13.pdf?dl=0

 

Thank you Medfeb. Interesting, that at the end 50 signed. That's not mentioned in the IOM Report.

 

There are authors of the IOM Report on that list...

 

The definition of PEM which most closely mirrors my own experience came from Dr. Komaroff when he used it to distinguish ME/CFS from depression:

The aspect that critically matches my experience is that PEM peaks the next day, not immediately following exertion. This seemed like it was reflected in Alan Light's 2009 study (below), that showed the expression of various genes gradually increasing after exertion and peaking 24-48 hours later, something not seen in healthy controls.

 

It reminds me of muscle soreness: Only rarely it sets in on the same day; my experience is it starts the next day, then it peaks on the second day. But there's also a delayed onset, after 2-3 days, which is not like muscle soreness.
I think it will be different for different people.

This is an interesting quote by Komaroff.

 

Me too - muscle soreness usually starts the next day and as I can remember from my healthy days was often worse the second day but it never came along with sweating, flue like symptoms, feeling fluish, brain fogged, raised heart beat, increased Orthostatic intolerance. And in healthy days the muscle soreness got better when doing light exercise as regeneration. By light exercise the muscles were better supplied with blood and could regenerate faster. But with ME the opposite is the case. Doing something on the next day or the 2. day makes things even worse as something accumulates and let you crash even worse.

 

My understanding of the Jason SEID study was he was using a very weak definition of PEM as you quote, whereas SEID criteria IOM I think go beyond fatigue after activity and are based on the understanding that a dr is using PEM to diagnose as we understand it, not just excessive fatigue which can occur in many illnesses or deconditioning states after exertion. That to me explains the very wide diagnosis rates. It's only more recently Jason has been refining and expanding what PEM should mean.
Jason has been very anti SEID.

Regarding his paper on ICC, I thought there were some possible issues there too, rather than it being the incontrovertible truth we use as a foundation that ICC diagnoses more psychiatrically affected patients. Even if it is true, if greater mental distress is found with greater symptoms disability (which ICC selects) I don't see that as a reason to use criteria selecting less ill patients. The issue especially with the psychiatrists was dismissing this supposed "symptoms and psychiatric correlations" as evidence people with many symptoms are actually mental health, somatoform rather than actually very sick and understandably struggling.

 

In this discussion of criteria perhaps we need to be mindful of the now dominant in the UK NICE criteria which requires as minimum just fatigue, post exertion fatigue and one other symptom. To me that would be an umbrella selected even broader than Jason's seemingly flawed SEID study did.

 

Yes, I've heard that Jason wanted to be on the IOM panel, or wanted his opinion to be considered, but it wasn't, so now he's hostile to SEID.

The CCC and ICC issues are also not clear. Again, I think it comes from interpretation of PEM/PENE, as Charles Shepherd wrote in the article I linked to earlier in this thread.

At their heart, ICC and CCC are very similar to London Revised and Ramsay, but the latter two are less complicated (but perhaps also less specific). IOM reads like an abbreviated CCC, but isn't that far from any of these.

What we need is an easy-to-use criteria that's still specific enough. I think getting PEM/PENE right is essential to this, because once you have that accurately diagnosed, you can be pretty sure it's ME.

 

Hmm,... Are you sure? As I remember it, he chose not to be on the panel out of respect for all the patients and advocates who protested against the panel and urged them to accept CCC instead of creating something new. He has commented openly on this, I can't remember where though (article, on his blog, on his Facebook page?).

I don't think it's fair to call him "hostile"...

ETA: "To Serve or Not to Serve: Ethical and Policy Implications" Leonard A. Jason
https://onlinelibrary.wiley.com/doi/pdf/10.1002/ajcp.12181

"The IOM solicited opinions from many patients as well as scientists, and I was invited to address the IOM in the spring regarding case definition issues."
https://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/

 

I think Jason was very principled in his actions initially when everyone feared the IOM was going to be a massive stitch up. Some maintain it still was, I think they were actually very helpful. I personally found Jason anti SEID as a position , more so than reasonable in some of his essays or papers or whatever after the SEID criteria was published and it looked bitter. Ironicalls if Jason has been on IOM we might have more agreement now. To me SEID is quite minimal but so is london, it just seems more disagreement over which precise evidence based requirements most accurately selects?

The thing to me is that he's been critical of most criteria without managing to persuade the world regarding something better in his opinion and with the evidence he gathers. This is the same in uk where the charities wouldn't endorse CCC, but haven't got London accepted either and in the meantime Fukuda , NICE and Oxford are still the main which no one likes.

 

Ah, so he was invited to join and declined. That makes sense. I was wrong about that bit. As for his justification...? Hmmm. I'm not sure.

Why did he decline to engage at every step if he knew this was going to be a major report with international clout? Why does he still not give us a better solution?

He signed a letter he had several problems with but wouldn't even deign to review the IOM proposals because it would put his name on it? I don't buy that.

He makes a big deal of his IOM criteria study, but equally found increased rates of psychiatric illness in the CCC and ICC criteria over the years too. He's being disingenuous if he ignores his own studies to hammer home the problems with IOM. As Cinders66 says, he's not really offering any better ideas, either.

The obvious suggestion is that it may not be any of those criteria that's at fault, but rather his shaky interpretation of PEM. Bad studies on criteria are as problematic as bad studies into GET, even if they reaffirm what we want to hear.

He's apparently recognised the problems with how he defined PEM now, which is why he's trying to come up with a new way to accurately capture it. I wonder if this would change the findings using the IOM criteria?

Let's set aside the name (I hate SEID as a name, but it's less offensive than CFS). Let's focus on what we know: PEM/PENE is ostensibly the single defining feature of ME. If this is true, then a criteria that helps us properly define PEM/PENE should be all we need to properly diagnose ME. The rest helps build a clinical picture but isn't essential.

IOM does require PEM, so the question is: how good is it at defining PEM? I'm not sure the criteria themselves are very good at explaining PEM, although the attached report (Beyond ME/CFS...) does a much better job and goes further to label ME a specific 'disease', rather than a syndrome, defined by that trait.

Taken together, they're far from perfect, but I think they've made a bigger impact on changing the US guidelines--and international perception of ME--than any of the other guidelines ever did. Lots of newspapers ran with the 'ME is real and it's physical' thing after the IOM report, which was really valuable, even if annoying in many ways.

Jason could have done much more inside and as part of the process, than outside. Many of the people who wrote the CCC and ICC were involved in the IOM report too. I think they cared about getting the best solution, too, but were required by their brief to find a new name.

tl;dr: Yes, Jason has found problems with IOM, but he found similar problems with CCC and ICC. I don't think we can consider him 100% reliable on this issue.

 

Unfortunately, I don't think we can be confident that any of the available criteria are that great.

I suspect that the different criteria used would be less of an issue if the various criteria available were all used responsibly, rather than as a part of junk-science that has harmed patients. Even for criteria like Oxford, I can see how it could be useful for patients, eg looking at a wide group of patients to try to find sub-groups. But loose criteria like this have so often been used as a part poor quality research that allowed medical professionals to make unfounded claims of expertise, it's understandable that patients will want to fight against this, and so it's become a really politicised mess.

 

When he presented his opinions at a meeting (was it to the CFSAC or CDC? it was a group listening to a room full of advocates and researchers) he seemed to be very upset he could not convince them to go against their leanings towards IOM and not go with CCC.

IMO, IOM is the way to go. No doctor is going to go through ticking off all the CCC symptoms and then ordering tests or referring to all the specialists needed, and insurance companies are NOT going to put up with that for a million people. NO WAY! The IOM makes sense and I think he is a bit upset over it. He seemed so during the broadcast of that meeting.

 

You mean CCC not CDC, right? If not, I'm confused.

 

I'll change that now!

 

I wouldn't be so sure. It's definitely not impossible.

Many of us are still working hard here in Sweden to try and make sure they use CCC for the various new guidelines that are currently under development.

CCC is already/currently being officially recommended for example in the Stockholm region, here:
http://viss.nu/Handlaggning/Vardprogram/Nervsystemet-och-smarta/ME-CFS-Kroniskt-trotthetssyndrom/

 

It's the US. Where doctors are strained to their limits and insurance companies make the decisions on what they cover. Referrals, specialists, tests, and how much they will cover and what co-pay a patient is hit with. And 1 million patients. At least 1 million.

 

Yes, I'm aware. Still, I don't believe it's impossible. Not easy, but not impossible either.

What about the experts' letter to the HHS recommending CCC -- many clinicians signed it, right? Why would they, if they didn't see CCC as a realistic option?