Points of convergence on people's positions on the IOM

[Sasha]

Interesting post by Jennie on this:

http://www.occupycfs.com/2013/10/10/convergence/

Particularly valuable analysis given the plethora of voices and positions that we now have on this situation.

Thanks, jspotila!

 

[caledonia]

Excellent summary and analysis - thanks for posting this.

 

[jspotila]

Thank you both!

 

[SOC]

jspotila -- Excellent piece! A clear, concise analysis was sorely needed and you provided it for us. Three cheers!

 

[Esther12]

I don't think I agree with any of these (depending on who the 'experts' are in 3):

1. The Fukuda definition is dead. Not a single statement – including the IOM Statement of Work – says that Fukuda is a reasonable definition. While no one is singing over its grave, everyone has tacitly acknowledged that it is time to move on and do better. This is huge!
2. The CCC is the place to start. Everyone agrees that CCC should be the starting point for a clinical case definition. The Experts’ Letter, Chu’s letter, and many advocates acknowledge that CCC needs refinement, but advocate for its immediate adoption. PANDORA, Bateman and the CFIDS Association all want to refine and operationalize it prior to adopting it in practice.
3. The case definition must be written by ME/CFS experts. The HHS Statement of Work does not define “expert” nor does it require a certain number or percentage of them on the IOM panel. However, all of the position statements I’ve reviewed make it clear that the definition must be written by experts, whether on the IOM or another mechanism. Bateman and the CFIDS Association seem optimistic that the IOM panel will have sufficient ME/CFS expertise. PANDORA is the only organization to attempt to define the degree of knowledge that makes an ME/CFS expert. The Experts’ Letter, Chu’s letter, and many advocates do not believe the IOM will appoint sufficient experts to the panel, and support the Experts’ Letter as the solution.

I think that a lot of the problems leading up to the IOM contract (which seems likely to be terrible for patients) stemmed from the misplaced belief of some activists that setting out the 'right' CFS criteria was the most important way of moving research forward, and that if we just got the right 'experts' around, their knowledge would lead to the development of this wonderful new criteria.

I really disagree. I think that a lot of the problems around CFS have stemmed from unwarranted respect for inevitably rubbish criteria (of all sots). Rather than coming up with yet another sparkly new criteria, we should have been pushing to ensure that all research was done and assessed with an understanding as to how flawed all of the available criteria were, and with an eye to identifying meaningful sub-groups. At the moment, decisions about how to define CFS, and 'manage' patients need to be more moral and political than 'medical'.

I think that the key point of convergence is limited to: If the IOM come up with a criteria which does not require positive evidence of cognitive distortions, yet still promotes the routine medicalisation of patient's cognitions, then this will be a terrible thing for patients.

PS: Thanks for providing a copy of the Vernon letter. Personally, I've lost quite a lot of respect for her over this. I'd previously been pretty impressed by a lot of her work, especially around the XMRV stuff. That letter seemed pretty sly, cheap and unhelpful to me.

 

[taniaaust1]

Interesting post by Jennie on this:

http://www.occupycfs.com/2013/10/10/convergence/

Particularly valuable analysis given the plethora of voices and positions that we now have on this situation.

Thanks, jspotila!

I cant get throu much of her post at all right now so probably will make more comments on it in the further.

I do want to comment thou on this part

Fourth, Dr. Bateman published a statement explaining why she was no longer supporting the Experts’ Letter on September 30th. Her statement came after a flurry of rumors that the Association had asked the thirty-five expert signatories to change their position (the Association denies this). The bottom line is: 1) the CCC is the best we have but it is not good enough and needs to be updated; 2) the IOM contract could lead to increased validation and federal funding; and 3) we should actively call for experts on the IOM panel and regroup if the panel falls short.

If the CCC isnt good enough, well they shouldnt be creating new definitions anyway as there is enough of them out there now!!! If the CCC isnt good enough then if that person was supporting us, they'd be calling for the International consensus ME criteria to be adopted. Anyone supporting less then those things, I dont see as being a good support for us at all. WE DO NOT RIGHT NOW NEED ANY NEW DEFINITIONS OUT THERE We have the CCC one, and if that one isnt good enough, there is the International consensus ME criteria... what kind of criteria is Dr Bateman wanting to be used if neither of those are good enough?

Creating a new criteria for no reason at all, means huge risk to us. If the gov have that much money to throw around a waste, why dont they put it into good ME studies.

Secondly.. that 3rd point is bullshit. How on earth would we fix things if the panel falls short??? Have the GWS people managed to fix what was done to them? I bet they are trying hard too and they have stronger support and are more together then we are. This whole thing sounds like some kind of con to try to convince people things would be fine when there is no way it would be if the panel fell short.

It just isnt a case of try this and if it dont work out we can then sort it out as is being implied.

We need to not back down on this and must not play into the games out there as it will only leave us screwed. I have no doubt about that.

Our orgs need to stay strong and not back down to support a new definition being done at all, as that is only playing into the hands who have already decided what is going to happen. They need be helping us to protest and keep protesting even if that panel goes ahead.. they need to refuse to be on committee to form a new defination as a new one isnt needed... they need to keep calling for the CCC to be adopted!!!

Any of our orgs who back down just to get their members on the panel.. I will say in advance are being terribly stupid and will be letting us all down and I can not respect naive orgs like that. As the outcome has already been planned and its not in our favour, its already been set up with biased and on that panel they WILL be outnumbered by the psychs etc and those who support that view. They have no goal to play fair and we have ALREADY been shown this.. so why would any of our orgs want to enter the dragons lair like Simpson and the Goliath (but I doubt there would be a right outcome!), when we need them to be strong for us.

I wouldnt trust Dr Bateman being put on that panel either at this point.. as obviously she isnt happy with either the CCC or that the ME definition, which would help to take us away from the psych field. So where's her head right now? (I'm even wondering if she could of been bought off at this point or offered a position on that panel). Why back down.. she's like a sheep following a flock (or whatever pressure is there) and letting the other sheep around her affect her. No matter her true views on ME/CFS, I dont see her at this point as being strong enough to be put on the OMI panel (im wondering if they will try to do that to condole us some or just bring in a few of our ME experts , but not enough to affect that outcome thou).

No matter who they are going to put on that panel thou..what "bribes" they could end up offering us, we need to still be strong and keep calling for CCC to be adopted at this point after what has already gone on.

 

[Nielk]

There is something you can do if you don't like or feel comfortable with what is happening with the HHS/IOM contract. Your action will make a difference. Every letter, e-mail, phone call, signing of petition matters. They all get read and there is power in quantity.

If you would like HHS to cancel the IOM contract, please take action. Please write to your representatives in congress HERE. You can sign the petition to stop the IOM contract HERE. The petition in support of the expert's letter is HERE.

 

[Chris]

Have just read Jenny's helpful blog, and posted a comment. Siobhan commented that the real answer is in two words: "Insurance. Lobby." and I think she is basically right.

In addition, some of the language they used about the GW thing is uncomfortably reminiscent of of the language of the DSM-V which will try to include us as "medically unexplained" and "somatoform disorder" or whatever that appalling phrase is. This document will be used to govern which treatments will be insured and which not--guess which they will be... The desired results have a nasty habit of feeding forwards into the process of inquiry.

I have written two letters to Sebelius, and may have to write a third... as well as having nominated many of those 35 heroes to the committee (if it has to happen, let's try to get the right people on). This whole thing has me really rattled! Pity there are so many threads....
Chris

 

[Ecoclimber]

One of the fundamental criteria of the IOM panel is that no one has a prior bias or predisposition. It would seem to me this would certainly disqualify CFS researchers/clinicians. The IOM panel has failed miserably over the last ten years to develop a dianostic criteria for patients. Partially because they were obstructed by a mandate from the Congressional Research Advisory Committe.

IOM Panel Criteria: "The long established study process, followed throughout the Academies, ensures that committee members are balanced for any biases and free from actual or potential conflicts of interest."