Sign petition to HHS stating CAA/SMCI does not represent "our voice".

[dancingstarheart]

Are the SMCI/CAA really promoting their own viewpoint, but pretending that this viewpoint is that of ME/CFS patients? I have not followed their press and news releases, so I am not familiar with what they do or say. How do their news releases differ from say those of the UK's Invest in ME organization, which also recently expressed its opinion on the IOM report (and as far as I am aware, Invest in ME did not represent it's own opinions as being representative of the ME/CFS community in general)?

They have specifically stated they want to turn the report into action, which to me means implementation of the report. They also have brought in Morgan Fairchild who they are promoting as an activist and a patient and mentioned the meeting is for "our community", which gives the impression they are also advocating for patients.

Here is a quote from SMCI's webpage regarding next Wednesday's meeting. ( I have added emphasis)
"While the briefing is by invitation-only due to the limited capacity of the venue, we will webcast the event so that all in our community can participate."

http://solvecfs.org/morgan-fairchild-joins-smci-in-dc-for-iom-report-briefing/

Here is the exact quote from SMCI's fb post ( I have added emphasis):
"On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

The briefing will feature three speakers:

- Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)
- Morgan Fairchild, Actress, Activist and Patient
- Carol Head, Solve ME/CFS Initiative President/CEO

You are invited to join us via webcast. Register for the briefing event here:

https://www.webcaster4.com/Webcast/Page/529/7674 "

 

[Hip]

@dancingstarheart
I don't see anything in your post that indicates the SMCI/CAA are promoting their own viewpoint, but pretending that this viewpoint represents ME/CFS patients.

The fact they want to promote the IOM report is neither here nor there.

 

[dancingstarheart]

I agree with parts of this (groupthink is a widespread phenomenon which everyone is subject to... people have a variety of knowledge sources and "patient" is not a patient's only descriptor), but let's not do the guilt by association part, ok?

1) We can check validity and sometimes truthfulness
2) It is almost impossible to determine motive; talking about motive often results in mudslinging.
3) Sorry, but organizations (or people in or out of them, whether previously or never associated with organizations) are not 100% good/evil (in most cases, and none of the exceptions I might think of are listed above).

The point about groupthink is that it's useful to consult with other sorts of people who have different viewpoints.

Even including people we might disagree with or not even like. (May not include people who cannot reason at all, such as the leading BPS proponents.)

Your first point, basically restated my comment.

For your second point, I agree it is difficult to determine motive but it can and should be attempted. A person's actions and comments over their career/ life, will indicate what outcome they are trying to influence. A sum of actions that results in hindrance of progress into certain areas of research or does not support certain sectors of the patient population cannot be disputed. I have applied motive to that type of evaluation; whereas others might the term motive to determine if a person is "good or evil" and results in mudslinging or sanctification. Many times people make compromises (this is where good/evil levels starts to grey) in hopes of accomplishing a goal.... allowing or not disputing certain actions in hopes of an organization or person will agree to an action deemed acceptable that reaches a goal. In that case the phrase, the end does not justify the means comes into play.

Not sure where you think that you need to correct me with your 3rd point. I never said the people or organizations are 100% good or evil. That black and white thinking is not realistic. But one can make a discernment whether one is in agreement with an organization's mission and actions, and well as an individual's. I do think a person's character can be assessed, especially with how they present facts and word things. There is such thing as clearly and concisely stating a fact, or stating a fact with such wording that prevents the reader from fully comprehending the significance of the fact with purpose of deception/distraction without explicitly lying.

Not familiar with what BPS stands.

 

[Sean]

BPS = biopsychosocial

–––––––––––––––––––––

The petition against SEID has already close to 600 signatures and it is growing - https://www.change.org/p/institute-...&utm_term=des-lg-no_src-no_msg&fb_ref=Default

As has been pointed out before, this kind of of public anonymous poll is easy to game by those who do not have our best interests at heart, and there is no shortage of them in this world. Don't kid yourself otherwise.

These kind of polls cannot be regarded as reliable, and that includes any done here on PR (including by me). They are not a safe basis for making claims and demands, either way. You could get 6 million signatures, but unless you can establish their provenance, then the result remains unreliable.

The main use of such polls, as far as I am concerned, is to explore possibilities for further discussion. Reading any more than that into them takes you into dangerous territory.

 

[elbosque]

Going by petitions, I'd say there's evidence for a few hundred patients who don't like the name and the definition but I don't know about a 'vast number', let alone a vast number of experts and stakeholders.

And of course, there are a lot of patients - probably the majority - who support the definition and the name.

I think it's important not to overclaim support on this issue.

Survey says ...an overwhelming majority dislike the IOM's criteria and new name, especially amongst those that patients, physicians and researchers who have read the report and understand the implications of their recommendations.

The pro IOM lobby likes to make nieve patoents think thay if they don't accept fhe report recommendations that there are no other options than reverting to the Fukuda. They conveniently compleyely ignore the reality that we have the CCC and ICC. Both of which are far superior to the IOM in terms of the experts who developed them and the research and real clinical experience tjey are based upon.

 

[Valentijn]

The pro IOM lobby likes to make nieve patoents think thay if they don't accept fhe report recommendations that there are no other options than reverting to the Fukuda. They conveniently compleyely ignore the reality that we have the CCC and ICC. Both of which are far superior to the IOM in terms of the experts who developed them and the research and real clinical experience tjey are based upon.

It's not a matter of "reverting". In the US, Fukuda is all we have. The NIH doesn't have to say "let's go back to Fukuda" ... they just have to ignore the IOM report and the status quo is automatically maintained.

The NIH has also completely stone-walled any attempt to take CCC or ICC into account, for as long as those criteria have existed. Please explain what you expect to change their minds on that account, in the next 5 years or so.

I'd also like to know if you believe that the current use of the IOM criteria would result in CCC or ICC having less of a prospect for being used in the future. If anything, I'd view SEID as a stepping stone which helps us get to the CCC or ICC eventually.

 

[Sasha]

Survey says ...an overwhelming majority dislike the IOM's criteria and new name, especially amongst those that patients, physicians and researchers who have read the report and understand the implications of their recommendations.

The surveys that we've been discussing on this thread relate to the name only, not the diagnostic criteria. And while the majority in those surveys dislike the name, that's a very long way from saying that a majority of patients do (including the majority of patients who have read the report). The issue of bias in those surveys has already been pointed out on this thread.

The pro IOM lobby likes to make nieve patoents think thay if they don't accept fhe report recommendations that there are no other options than reverting to the Fukuda. They conveniently compleyely ignore the reality that we have the CCC and ICC. Both of which are far superior to the IOM in terms of the experts who developed them and the research and real clinical experience tjey are based upon.

I don't consider myself part of a 'pro-IOM lobby': but I accept I might look like one who wants the report rejected outright. My position is that there are things that could be improved, but my concern (and that of many others) is that we should call for the report to be accepted and lobby for those changes, rather than call for it to be rejected. Because the risk genuinely is that we revert to Fukuda. People who want the IOM report accepted don't ignore the reality that we have the CCC/ICC but we challenge the idea that they have any realistic chance of being accepted: the publication of the IOM report makes that less likely, not more.

Repeated efforts by the community to have the CCC adopted have failed, for over a decade. Most recently, patients and 50 of our clinicians tried to stop the IOM process and called for the CCC to be adopted. That failed. The CCC were considered in the IOM report and rejected in favour of different criteria, which makes it extremely unlikely that HHS will now accept the CCC - the HHS paid for the IOM report (among others) and their own $1m report is telling them not to accept them.

This problem with getting the CCC accepted, and the risk that rejecting the IOM report therefore presents has been pointed out over and over on this forum over the past few weeks. No-one is 'conveniently ignoring' the existence of the CCC - in fact, the problems in getting it ever accepted have been central to the debate.

 

[Undisclosed]

This thread has NOT been closed because it is off-topic.

It has been closed due to numerous personal attacks, inflammatory comments, and rudeness.

Comment on the post content, not on the member. If you can't post without making accusations directed at other members, without making negative personal comments about members, without attacking Phoenix Rising, and so on, you will likely find yourself banned from threads and/or bannned from Phoenix Rising. It's very unpleasant to have to keep reading the constant arguing and personal attacks on the forums these days. When did it become okay to attack another person for simply having personal views? Our rules are aimed at trying to keep members safe from personal attacks and if we have to take a hard-line re: repeated rule breaches we will. So the next time you feel like lashing out at a member, making negative comments about them, making what appear to be trollish comments to inflame members -- think hard about what the result might be.

Here are the forum rules -- Follow them!

The thread will be re-opened after the rule breaches have been removed. If you find that you have been banned from this thread, take it as a message from the moderation team that you have gone too far.

Thank-you

 

[Undisclosed]

The thread is now open to post on. Please note, any member posting personal attacks, posting rude comments, and/or inflammatory comments will be immediately banned from the thread.

Thank you.