MEAdvocacy.org call for rejection of the IOM report in Washington Post blog

[Bob]

So why doesn't everyone take a deep cleansing breath and wait to find out what the NIH has decided.

Perhaps because people would like to influence that decision before it's made?

 

[Bob]

It would be best IMHO, if everyone should just chill out, tone down the rhetoric, stop attacking each other, stop reading more into things or taking things out of context...

lol, if we can achieve that it'll be a first for any online forum! Definitely a worthy aim though!

 

[Ecoclimber]

Perhaps because people would like to influence that decision before it's made?

They can influence the decision if they have a seat at the table and are able to participate. But I don't see how that's possible if the only thing that the NIH hears is the shouting from two different directions..scratch that from a myriad of viewpoints...gheesh, it's like herding cats...no offense to cat owners.

 

[Wally]

I am not sure if this has been posted elsewhere on the Forum, but it appears that one arm of the HHS may already be marketing the IOM Report. While not an explicit statement from the Secretary of the HHS that the Report and its recommendations have been accepted by her Department, it does seem to imply that some divisions/agencies under the HHS umbrella are moving forward as if this decision has already been made.

FW: [MARKETING EMAIL]IOM Report "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" - Guide for Clinicians

From OS OPHS CFSAC (HHS/OPHS) CFSAC@HHS.GOVhide details

To CFSAC-L CFSAC-L@LIST.NIH.GOV
Wed, Feb 25, 2015 10:22 am

From: IOM ME/CFS Study [mailto:mecfs@nas.edu]
Sent: Tuesday, February 24, 2015 04:35 PM
To: Lee, Nancy C. (HHS/OASH)
Subject: [MARKETING EMAIL]IOM Report "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" - Guide for Clinicians

The Institute of Medicine

View this email in your browser


IOM ME/CFS Report Guide for Clinicians

On February 10, 2015, the Institute of Medicine (IOM) released the report Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The report defines ME/CFS as a “serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients” and presents new, streamlined criteria to aid timely diagnosis of the disease. Furthermore, the report recommends that the disease be renamed systemic exertion intolerance disease (SEID) to more accurately capture a central characteristic of the illness.

We are pleased to announce that a Clinicians’ Guide to the IOM report is now available for free download.

Other resources available at www.iom.edu/MECFS include:

• PDF of complete report
• Presentation slides from the public release event
• Archived video from public release event
• 4-page report brief
• ME/CFS fact sheet
• Diagnostic Algorithm
• Proposed Diagnostic Criteria

Please consider helping the IOM promote the Beyond ME/CFS report by sharing these resources with your colleagues, linking to them on your website, and promoting them through your social media channels.

 

[snowathlete]

Since the IOM report came out, all I hear here on PR is praise for it. Whenever I pointed out any issues/problems with it I was shut out. Every article that came out in favor oh the IOM, was praised here. Now that an article came out showing the other point of view, there has been furor here. This is not a climate for fair discussion.

I think this latest media article is different because it is from a group saying they represent patients. That is what's signficant in my view and that makes it more emotive. I think it was badly handled and I expressed that, but although you are involved with ME Advocacy.org, that frustration is aimed toward the organization as an entity and ought to be shared among the 20 or so of you at the core of it. I'm sorry that you being a member here perhaps meant you felt most of the brunt of that dissatisfaction.

I think we are all experiencing frustration at the moment, the discussions around IOM are very intense, but I don't want us to fall out. I've still got lots of love for you Nielk, even though we don't agree on this topic. OK? So please don't take any of it personally.

 

[Ecoclimber]

I can't see how this can be a called a guide for physicians when there are no treatment protocols listed for the disease unlike the IOM Gulf War Veterans Report or is that suppose to come out of the P2P? It seems even the upper echelons of HHS are confused over the purpose of both panels.

 

[snowathlete]

I can't see how this can be a called a guide for physicians when there are no treatment protocols listed for the disease unlike the IOM Gulf War Veterans Report or is that suppose to come out of the P2P? It seems even the upper echelons of HHS are confused over the purpose of both panels.

I am concerned about this. It wasn't on IOM's remit, but was that because NIH etc thought they might rule out CBT and GET? Judging by their report it seems very unlikely they would have reccomended them.
Regardless, the important thing now is, Who has the task of coming up with treatment protocols? Not sure anyone knows.

 

[SOC]

Every article that came out in favor oh the IOM, was praised here. Now that an article came out showing the other point of view, there has been furor here. This is not a climate for fair discussion.

It is easy to feel ganged up on when you take a minority position. The articles that came out in favor of the IOM are praised more because more people support them. It's just a matter of numbers. Not everyone agrees with the IOM report. Not everyone disagrees with it. It's unlikely that that division of opinion is going to be 50/50. If you are hearing more praise for the report than criticism, that's a sign of the balance of opinion, not a desire to shut you out. It's important that your opinion be heard, but don't be offended if the majority don't seem to agree. It's not personal. It's simply a matter of not everyone agreeing with your position. Nothing wrong with that.

People are just as entitled to object to the article showing your point of view as you are to object to the IOM report. It's always best to have multiple viewpoints aired here. You many not like that many people objected to the article, but you might want to consider that it's not so much a "furor" as a measure of the number of people that don't agree with your position.

 

[Wildcat]

.

@Nielk wrote:
"Since the IOM report came out, all I hear here on PR is praise for it. Whenever I pointed out any issues/problems with it I was shut out. Every article that came out in favor oh the IOM, was praised here. Now that an article came out showing the other point of view, there has been furor here. This is not a climate for fair discussion."


I agree with Nielk. Its strange how quickly praise and support for SEID, the Report (which I have read) and the Physicians guide, has developed on this forum. And equally strange how quickly the previously embraced CCC and ICC, and agreement with the 50 Experts Letter to the IOM, have been discarded on this forum.

That is simply not the case outside of this forum, on diverse other ME forums, where patient and advocate criticism and rejection of the IOM SEID is widespread. Outside of Phoenix Forum, criticism and rejection of the IOM SEID appears to be the majority view.

 

[Esther12]

Best wishes to all those involved in trying to talk this out.

It is a lot of information to process and the report has not been out long. Also, it's incredibly difficult to predict how something like this will really affect patients. So much depends upon how other people with power react to it, and we've been burned here before so I can understand people being concerned about any potential for problems. It will be interesting to see how the final P2P report is - if that is helpful, then the two reports could work together in a useful way.

.

on other diverse other forums

What are the other big forums at the moment?

 

[Kati]

There are a variety of reasons why people may be in favour of the IOM. Maybe they are feeling optimistic that our experts have done a good job in representing their illness. Maybe it's because they reviewed over 9000 papers. Maybe it's because they didn't discard papers which had a n=10. Maybe it's because there was no usual BS about CBT, GET and psychobabble. Maybe they trust people like Nancy Klimas, Dr Bateman, Chris Snell and Ron Davis.

And maybe, just maybe, fighting for history, fighting for a name which the medical community doesn't accept and fighting for a 10 years old, or never used criteria is not going to get us very far.

Pick your battles, save your energy.

PS Ivwonder if the women with hysterical paralysis fought to keep their name intact, especially the word paralysis instead of changing for a sterile name like multiple sclerosis

 

[GracieJ]

This is a bit off-topic, but appropriate, I suppose, on any of these related threads.

I am so sorry to see us split as a community, but it is understandable given all the factors. I am also very glad it is out in the open and being discussed.

Here is my position, for what it is worth.

I am working 28 hours a week, in a relapse that seems to have no end in sight, cognitively challenged worse than ever before, and I feel totally SWAMPED by the amount of reading I need to do to fully comprehend the ups and downs and ins and outs of the full picture of the IOM report, let alone P2P.

At first blush, I think it is politically wise to be gracious to the committee who produced the report. It is a breath of fresh air to hear people from such a committee say good positive things when they could easily have sunk this whole thing in much different wording. It is to our advantage to strategize from there.

Having lobbied on a state level back in another life, I am not naive to the tangled mess this is currently. It is just really tough getting up to speed.

@Nielk You have expressed a lot of frustration, and I do not blame you. Please understand that it is hard trying to catch up when the players are worn out and losing patience. I am trying to understand your point of view, and I know I am not the only one. I have said little because there is much to absorb. There is also an attitude of "How can you think that?" going both ways which is best set aside.

It is time for solidarity, somehow, some way. I do not think we have abandoned ICC or our experts. I think there just has to be a way to get these things merging as research emerges.

I wish I could do more. For now, about the most I can do is stay up with the threads here, read more background material as I can, and continue to explain it to family, friends, and colleagues as I go. I am hoping to get some halfway intelligent letters off to key parties as well but that may have to wait.

I am open to suggestions for how best to proceed to contribute.

 

[alex3619]

Perhaps because people would like to influence that decision before it's made?

The NIH has a stark choice, unless they want to modify the report, which I am not sure they can, though they might be able to modify the recommendations before acting.

That choice is this: accept SEID and the other recommendations, including diagnostic criteria, or reject it. We can influence them, but if the report is stopped we will stand with the status quo - ME/CFS, dominance of Fukuda, and probably no better funding.

I am taking a wait and see approach before deciding on advocacy as we do not have enough information. That in part is due to the flawed IOM process, but that is not the same as the report or the NIH response to it.

In the meantime I would like to see Lenny Jason start a study comparing SEID with ICC, CCC and Fukuda. We can ignore Oxford, it should have been retired in 1992. With a study behind us we will have some real data to go with the speculation, however limited such a study might be, and we will have firmer grounds for deciding on advocacy.

 

[Wildcat]

.
This may be a big forum, but swathes of the forum are not about politics or research, there are quite a limited number of posters in the politics and research sections, the majority of whom are regulars.

 

[Kati]

in my views, here is what priorities ME Advocacy should have in holding a PR (public relations) campaign:

1) federally funded biomed research
2) get a medical specialty assigned
3) access to multi-center drug clinical trials and approval of Ampligen

There is no need to be so reactive from the IOM report. Science is known to self-correct, and via adequate research, things will happen. If we could only get there already.

 

[Ember]

...people like Nancy Klimas, Dr Bateman, Chris Snell and Ron Davis.

Dr. Snell was a reviewer: "Although the reviewers...provided many constructive comments and suggestions, they were not asked to endorse the report’s conclusions or recommendations, nor did they see the final draft of the report before its release.

 

[Undisclosed]

Please note, we have removed some personal attacks from this thread.

Again, please refrain from directing negative personal comments at each other for the sole reason that you don't agree with another member's personal opinion. It is possible to debate these issues without getting personal. If you come across a personal attack, please report the post and the moderators will deal with it.

If there are any further personal attacks on the thread, those engaging in the attacks will be banned from the thread.

Thank you.