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IOM's response to patients' concerns about panel selection

Nielk

Senior Member
Messages
6,970
Many patients and advocates have been sending e-mails to the IOM expressing their concern regarding the selection of non-experts to the panel. Here is IOM's response to one of those e-mails:


“I have been receiving lots of emails from the patient and advocate communities, so I certainly recognize and understand the shared perspective you offered.

The IOM staff are working to convene a committee that includes ME/CFS experts, as well as those who are less familiar with the disease, but capable of objectively approaching and understanding the scientific evidence and experiences of the ME/CFS experts and the patient community.

Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS, so the participation of committee members from both perspectives is very important.

Best,

Kate Meck”

This letter speaks for itself. This is the mindset of the organization who will re-define ME/CFS.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Many patients and advocates have been sending e-mails to the IOM expressing their concern regarding the selection of non-experts to the panel. Here is IOM's response to one of those e-mails:




This letter speaks for itself. This is the mindset of the organization who will re-define ME/CFS.

Why do they fear ME experts lack objectivity? That's a bit galling. Is there any precedent for this attitude?
 

leela

Senior Member
Messages
3,290
Extra points for totally evading the question of the CCC/ICC.
Ultimately, the diagnostic criteria recommended by the committee will be used by physicians/clinicians with and without experience in ME/CFS
If it's a crap definition, it most certainly will *not* be used by physicians/clinicians with experience in ME.!
 

Izola

Senior Member
Messages
495
In my humble opinion, gather up all the foregoing responses and ship them off as a reply. Of course my social isolation has left me bereft of appropriate social discourse, but it certainly will set a few of their humanoids back on their heels and maybe provoke a little teeny bit of thought. Oh dear, I keep hearing, in the distance ". . . slay them!" And, oh dear, my imagination has run about on its own., again. Izola
 

aimossy

Senior Member
Messages
1,106
its almost like the response was code for oh yes we will have some medical experts to see if yours and the science speak the truth.
far out I hope some super quality studies get published before the end of this process.
it was quite an arrogant response to very concerned people.......oh but we are used to being looked down on. two finger salute to that personally. hope I don't offend anyone here saying that.
we will win this war of recognition eventually. patients with ME have learnt the art of serious perseverance in ways they couldn't even comprehend.
wish we had a two finger emoticon sometimes.LOL:D but that could turn out a bit inflammatory.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Would I want to see only ME medical experts on the panel?

Not sure. I'd certainly like to see them in the majority and called to provide evidence alongside researchers. I'd certainly value their opinions highly and would want them to contribute to the recommendations, and certainly to endorse what is produced.

However, I'd also like some present who don't have experience of ME to ensure that the recommendations and operationalised 'guideline' reinforces that ME is real and distinct and can be diagnosed effectively.

We do need to be as certain as we can that other common diseases are able to be dismissed as not being 'CFS'. That alternate explanations for the presented symptoms can be recognised and I think input from non-ME-experts would be useful.

I mean how many times do we hear that doctors don't know what they are talking about due to their disbelief and/or unfamiliarity?

If some more general - but related disciplines - are present their opinions may help ensure what is produced is more capable of swaying ignorant doctors when it is published.

Do they need to be on the panel?

I suppose they could be called as non-contributors to review what is produced, but I think their endorsement of the recommendations could prove useful.

It might also depend on who they were. Hard really to interpret the reply in the email at the top of this thread - though I can certainly see why you have all responded as you have.

I'd like to see something produced that has run the gauntlet of many opinions: they are after some form of consensus after all (though you'll no doubt feel that word is open to interpretation - and rightly so).

At the end of the day, whatever is produced, will not please everyone in every respect. And you could say the same about the Canadian Consensus as well, which is after all yet another compromise of opinions, appropriate only until such time as the elusive biomarkers can be found, substantiated and applied.
 
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aimossy

Senior Member
Messages
1,106
I actually agree stormy that you need a mix and your rationale for why!
it's the unfortunate approach of wording that is used to address a group of people who have expressed distress and concern and have been through so much.
its the attitude, dismissal and lack of openness in the way they communicate that keeps traumatising people who have already been traumatised, that triggers the angry response. pretty hard to develop trust.
I hate the attitude but still hope that quality research gets published before the end of the process and still hope that all the pressure that gets applied will have some influence on outcome at least in the sense that they will know they will have some pretty angry people if they basically spit on us now stormy.:)
sometimes i feel at the moment like we are at the beginning of the crux period of history with this condition.
like we are on the very edge of the verge of change that's happening.
some people may think that's too positive but I can understand if people still feel negative in this sense.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Firestormm, it would be great to have non-voting consultants in case definition drafting, neurology, immunology, etc., a research staff and million dollar budget at an all-ME-expert panel's disposal to improve the CCC. I say please treat us seriously like any other disease and get us those resources and Id be thrilled.

But our experts are not babies who need babysitting and approval for an ME definition by non-experts who know nothing about ME! That's ludicrous. Who cares if we get some more credibility in the outside world for a definition that is flawed because too many amateur cooks have thrown in their own ingredients and ruined the soup?! That ruined soup is a ruined definition that will continue to ruin the science, ruin our health and ruin our lives. Enough already! Non-experts are non-negotiable.
 

Ember

Senior Member
Messages
2,115
it was quite an arrogant response to very concerned people...
Kate Meck credits only those less familiar with the disease with the capacity to objectively approach and understand “the scientific evidence and the experiences of the ME/CFS experts and the patient community.” With expertise reduced to experiences, clinical observation is rendered unscientific.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
@aimossy Lol to the 'stormy' :rofl:

@justinreilly I think if we had more of an idea what it is the non-experts will do it might help, but I do think that ME or CFS especially in the US is in need of greater approval of any definition, than is occurring simply among those who claim to be most familiar with the disease.

It may also be part of the approval process of course. Other disciplines - represented by non-ME experts - may need to sign-off on the recommendations, but I would imagine they would be needed to contribute.

I do understand the idea that having non-experts taking part may further dilute what is hoped will be a 'tight' definition, and that you might feel for example that the NICE Guideline is too broad, and too indulgent of CBT, GET and Activity Management. Though it would be rather good I think to hear what it is you do want - not you specifically - by way of a 2013 CFS/ME Guideline for the USA even if the CCC forms the backbone of it.

Right. That's me. Off back to bed.