Discussion of the NEW International Consensus Criteria

[Bob]

I never meant to diminish Suzie's past and present works.
Unlike others here, the questions she was pausing in my mind didn't make sense and I am allowed my opinion.
Firstly, even if they did make sense, this forum certainly would not have the answers so the fact that they were posed here shows me that the intent was not to find answers but to instill questions in people's minds.
By questioning - who started this? who was consulted before and after? when was it started? who owns it? why the surprise? why didn't we hear about this before?
All these are questions that have no reflections of the actual content of the paper. As far as who - it is obvious who authored this - they all included their names. Who owns it? they stated that it is their own with no financial ties to anyone.
It's like the Bill of Rights of the US. Who wrote it? the ones who signed it. I don't understand the difficulty here or even the fact that there is a question about it.
As far as how it relates to Jason's work or the fact if the CDC will accept it. Do you really think anyone on this forum has the answer to this? If we would wait for the CDC to act on their own we will be waiting forever.
Suzie keeps mentioning that "other forums" are also questioning it. That doesn't impress me either. That makes it legitimate? the fact that others are questioning it? It's like more weight is put on any anonymous person posting on a forum than the distinguished clinicians with years of experience with this illness?
I think it's fine to ask questions but, the specific questions paused were irritating to me.
I feel like a few people here have taken away the excitement and the momentum of this important development.
It should have galvanized us and excite us and pushed us to build on it and support it.
Now it fizzled all out.........................
Sad.
Frustrating.
Disappointing.

I understand your enthusiasm and optimism relating to the release of these new criteria.
We definitely need a better deal for ME patients.

But in reality, these new criteria are not going to be universally accepted and used, purely because they have a few prominent authors.
The ME community, and all other interested parties, need time to read, study and digest these new criteria and to put them into context. And this isn't going to happen over night.

No one is going to just accept the new criteria without carefully considering their background, and studying the details. There are going to be a lot of questions asked, and a lot of scrutiny.

Suzy's questions were an attempt to put the new criteria into context.
Many people will be interested in putting the criteria into context, including myself.

For example, some questions that some of us are interested in are: "What is going to happen to the Canadian Consensus Criteria now?" and "Which is better for ME patients - the CCC or the new ICC?"

I've got a lot of respect for Lenny Jason, and was eagerly awaiting his work on the CCC. So which set of criteria should I be promoting now? There are so many questions at this stage.

This is absolutely not a case of attempting to instill any questions into people's minds. This is just a normal process of trying to understand all of the issues.

Have you really decided that these new criteria are better than the CCC when they've only been published, in draft form, for a few hours?

I understand your excitement, and then irritation, but there really are many questions to ask at this stage.

You mentioned the US Bill of Rights, which I don't know much about. But were US citizens expected to accept it without question? Were US citizens consulted during its creation? Who chose who would create the Bill of Rights? Did US citizens vote on whether it was implemented or not? Was it created in secret? My point being that Suzy was questioning why there wasn't wider stakeholder involvement in creating the ICC. A perfectly valid question, for which there might be perfectly valid answers.

 

[Wildcat]

@ leela - Its not a game - its life and death.

 

[leela]

For Heavens sake - This is not a game. Its our lives - if you want to "play nice" then you obviously have no idea about the actual lives of people with Neuro ME!

Wildcat, you make assumptions about how obvious my case diagnosis is, or the urgency with which I, as everyone, await
effective treatment.

Perhaps you missed my point, which is that we can all make our various points without abusing each other.
Just as effective, if not more so, and saps less energy from everyone.

And I know you are aware that "play nice" is a turn of phrase and that no one here thinks this is a game.
Some of the language on this thread is verging on bullying, and as someone with Neuro ME I don't appreciate it, and was trying to
communicate that as gently as possible.

 

[fla]

Here's a good ME criteria:

1) Patient attempts to read a thread on an ME forum about a hot ME topic for 10 minutes

Result: If patient has PENE for 48 hours he has ME

Seriously though is there something in the criteria that is wrong that shouldn't be there? Is there something critically important that should be there but was omitted? I skimmed through it and did get PENE for 48 hours so if those less severely afflicted by ME could provide constructive criticism about the contents it would be highly appreciated.

 

[max]

The UK did not 'accept' the CCC - they 'aint never gonna accept the ICC unless they are forced -

.... only if it is a fact that the ICC is in use in every other country, will the deaf, mute, blind, cruel, thieving UK government slowly, cautiously agree, in principle, to promise to think about it, with the view to suggesting that in the next parliament, the matter could be raised on a dark cold mid-winters night, at 3-30am, because, plainly, as history proves, time and time again, they clearly do not give a stuff about people with ME or their families.

The ICC, the CCC, Oxford, London, CDC, Fakuda, my Aunt Sally - how many more will there be - I too was somewhat elated, AGAIN, when the ICC news popped up - but Suzy does make valid points, (as much as I do not like to admit - hope she's too busy to read that bit) - but then again, so does Nielk.

As always, we will have to wait. No matter how many times we decend into argument/disagreement - (certainly not rare on here), the only people that get wound up is 'us' - Wessely must wet himself reading this stuff.

Onwards and upwards ladies and gentlemen, it is another step, no doubt there will be more.

max

 

[Wildcat]

I like your post Max. But the facts are that many of us do not actually have any more years to wait for "more".

There is too much complacency and a kind of "let it be - it will take time" attitude, while lives are wasting away and being unecessarily destroyed. I had hoped that my posts about the actual persecution of children with ME in the UK would have made an impact - but apparently not.

 

[kurt]

MOD - Wildcat (and possibly others, I have not read the entire thread) please stop insulting forum members. Read the forum rules and don't expect us to make an exception just because you feel strongly about what you post. 'play nice' may not be the best way to define the behavior expected here, I agree that ME/CFS politics is not a game, but in order to have freedom of speech here every viewpoint must be protected as long as posts are civil. Please show more respect for other forum members and ME/CFS patients, even if they don't accept your viewpoint, or if they disagree with you.

Referring to the rules (see the button at the top of every screen), the posts here have become argumentative. If this can not become a productive discussion of the intended thread topic (The ICC), the thread will be closed.

From the forum rules: A good sign of a discussion going south is when a thread shifts from focusing on an issue to personal attack. We are dealing with volatile issues but knee-jerk personal responses can quickly send a discussion veering towards disaster with recriminations lasting long after the actual discussion ends; feelings are hurt, friends are no longer friends, and the forum ceases to be a safe place for all to engage in. Eventually the Forum becomes, if not dominated, at least tainted by overly aggressive individuals, and people with quieter voices flee to safer pastures. Please keep the focus on the facts of the topic at hand - not the person delivering it.

 

[eric_s]

I hope this won't offend Brits, but how come the Tymes Trust won the Queen's Award for Voluntary Service when the situation is as bad as you describe? I don't doubt the problems UK people with ME/CFS are facing, but somehow this doesn't really make sense to me. Even the queen supports one of your charities but on the other hand you don't get recognition by the government?

I don't know about the individual situations of people posting here, but i think one should be aware that in the USA there is probably less welfare state than in the UK, so i would not necessarily call US people pampered. If they run out of money, they are in bigger trouble than Europeans, i think.

 

[max]

Wildcat - Tell me about it - this forum is weird at the best of times.

I do understand your 'frustration' (massive understatement I know) - seems like brick walls were designed with ME peeps in mind - coz that's all we seem to hit, one after the other, (and I don't have ME, I'm just a carer, it amazes me how much effort you people summon to air your voices as I see the pain this illness dishes out every single day), BUT, we are still here today, and we have to keep going and ....... you know, .......don't let the bastards grind you down and such other annoying words.

We will win, we have no alternative.

I detest psycology, I detest psychiatry - It turns my stomach when I see the damage and hurt that has been dealt from their hands at the will of the government - it will change. Too many lives have been ruined - I'm sooooooo with you and your 'anger' - you should read some of SilverBladeTE's stuff - he directs his anger right where it matters, and he keeps on going.

I know the above is a load of crap, and you've more than likely heard it a thousand times, but some of us do give a dam .............. hope yer ok 'bro (or sis') !
max

 

[eric_s]

kurt, You obviously so not appreciate the position of ME sufferers in the UK, in particular the position of ME sufferers in the UK "Death County" of Sussex. Your prissy, nicey nicey attitude is not saving lives in Britian.

But then what will? You have to find out what will help and then try to do that. I would be interested to know what people think should be done to turn the situation in the UK around. But probably this is not the topic of this thread.

 

[max]

here we go, its the police, why can't we for once sort it out ourselves - some of us are angry, yes we know the rules, why not have a forum especially for those times when we are angry - its only words on a screen.

and if you've not read the whole thread.......... read it.

max

 

[Firestormm]

Will/Has Cort or anyone be making a response or assessment of these new criteria? Sorry am not familiar with how it all works here but I notice that he/you publish articles and things.

Would be interesting to hear/read of a review...

 

[max]

Hi Eric

We (in the UK) are doing stuff - if Wessely was Swiss, you WOULD understand.

 

[kurt]

I will read the thread, but my comment on following forum rules has obviously been ignored, the insults continue, so this thread is closed. Directing that pent-up anger at other forum members or moderators is just not acceptable.

 

[kurt]

Here is a follow-up, I have read through the entire thread now. And that just confirmed my view. While there are valid points being raised, a good discussion that is needed, the rudeness here towards each other is beyond what I believe is acceptable here. Some forum members are taking personally any disagreement with their views, and others are seeing fit to make somewhat condescending corrective statements. Rather than let this continue spinning down, please everyone take a break for awhile.

 

[jace]

It would be helpful if Suzy's (and my) question was answered. At the moment, the etiology of the document is unclear, with regard to NME/FMAN's involvement.

 

[Cort]

After a cool-down period this thread has been re-opened. This is potentially a very important paper and an important effort by a wide swath of the research community. At the same time several major figures are missing and ANY attempt to advance a new definition will automatically raise some heat. Let's please stick to the pros and cons of this very interesting paper.

 

[Cort]

Speaking as someone with CFS and (not as a moderator) who has still not, gulp, read the entire paper thoroughly, from what I've read, whatever the pros and cons of the paper, etc. I very much welcome any attempt to put CFS er ME on a physiological basis and I was very glad and really quite surprised to see this paper appear in a Journal that I have been told is good one. I think that fact alone is important and I imagine it is due to the continuing 'fall out' from XMRV that has lead the research community to look more closely at ME.

I do tend to be an optimist in these matters but the fact that a substantial swath of the research community was willing to fight for ME as the name for this disorder is very encouraging to me and presents a substantial shift. It suggests to me that they feel that enough evidence has been gathered for them to present a strong case.

As to Dr. Jason - he is a significant holdout and there are others. Dr. Komaroff was involved in the original definition and has spoken out several times on the mistakes made in it, and as a professor from Harvard everybody loves to have him behind them. The research director of the CAA, Suzanne Vernon was not on the list either. Staci Stevens was there but Dr. Snell, her compatriot at the Pacific Fatigue Labs, was not. Dr. Peterson was not there either. Given the long list of researchers in the article we have to assume they were asked and declined.

On the other hand, Dr. Bateman - generally a rather conservative figure - is in there as well as Dr. Broderick, Dr. Klimas and others. This group - I assume lead by Dr. Carruthers - who was a central figure in the CCC, was able to round up some significant figures and not some others.

In any case it thrusts the question of what ME/CFS er ME is into the scientific worlds spotlight and presents an alternate view and that is a good thing I think.

 

[Nielk]

Cort,

Thank you for re-opening this thread as I agree with you it is such an important topic for all of us.
I think it will take time to see how it will be accepted and really used.
The fact that some names are missing from the authors - we (or I) don't know at this point if they were asked and refused or maybe not asked at all.
I think the authors have taken a bold step with their reputations at stake. I am sure they didn't take this lightly.
It would have been much easier for them to do nothing and just let things be the way they were. Status quo. But, they decided to take this giant step. For me, I feel that it is a gift. I can think of many names that weren't included but does that make it powerless?

 

[Sasha]

Thanks for reopening this thread, Cort, and for calling for calm - although it's an interesting topic I've been avoiding this thread while it was less than calm.

In relation to the "missing researchers", I wonder whether some who were invited were simply unable to attend the meeting, which may have been quite long. I see they used the Delphi process to reach agreement, which is a reiterative process in which you need people to be actually present and discussing things, until they hone in on the elements that they can agree on. It can take quite some time (days wouldn't surprise me for a thing like this). There would be nothing to stop researchers writing in later in support of the ICC even if they hadn't been able to be present at the consensus meeting.

Forgive me if this has been raised earlier in the thread, but does anyone know the process by which new disease criteria get ratified to such an extent that researchers and physicians start using them? Presumably there's a bit of a messy time before it would get round to fitting in with whenever the WHO or other organisations do their periodic revisions of disease criteria (which I think is every few years, but I'm not sure).