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Action alert: Tell media/congress "What would you do if you were well?" for Mar 25 briefing

Sasha

Fine, thank you
Messages
17,863
Location
UK
Cort gives more detail about Solve ME/CFS's 25 March event and it sounds potentially very productive. You can help persuade the media and congress reps and decision-makers to act! We've been waiting for initiatives to pressure the NIH for more funding using the IOM report as a weapon and this is the first big one.

Cort on Health Rising said:
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:
  • Morgan Fairchild, Actress, Activist and Former Patient
  • Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  • Carol Head, Solve ME/CFS Initiative President/CEO
Solve ME/CFS said:
We also plan to include a slide display before the briefing with quotes from patients that answer the question, “What would you do if you were well?” Our hope is that the responses will demonstrate to those present the devastation and debilitation ME/CFS patients suffer as a result of the disease and why the need for more research funding is crucial. Please click here to respond – it will only take a moment:

If you want some inspiration, Ryan Prior has been running a series of answers from patients on his FB page over the past week, here. I don't know if anyone has the time to type a few out, for those who don't have FB and can't see them - there are some great responses!

Crack on, folks! This could be a hugely important meeting and this is a great idea for advocacy - very novel, and it humanises us.

Can someone bump this thread when the US wakes up? I won't be on the forums for the rest of today.
 

Nielk

Senior Member
Messages
6,970
Cort gives more detail about Solve ME/CFS's 25 March event and it sounds potentially very productive. You can help persuade the media and congress reps and decision-makers to act! We've been waiting for initiatives to pressure the NIH for more funding using the IOM report as a weapon and this is the first big one.




If you want some inspiration, Ryan Prior has been running a series of answers from patients on his FB page over the past week, here. I don't know if anyone has the time to type a few out, for those who don't have FB and can't see them - there are some great responses!

Crack on, folks! This could be a hugely important meeting and this is a great idea for advocacy - very novel, and it humanises us.

Can someone bump this thread when the US wakes up? I won't be on the forums for the rest of today.
Carol Head does not represent most of the U.S. patients. As a matter of fact, she doesn't represent any. She heads a private organization that does research.

If this was meant to represent U.S. patients, they would have invited patients and advocates to the meeting. I and many others in the U.S. do not accept this promotion of the IOM report in the guise that this will be a fundraiser for us.
 

duncan

Senior Member
Messages
2,240
They are parading a FORMER patient? I don't care who it is, I fear this is sending the wrong message right off the top.

Moreover, tell delegates what sufferers would do were they well? Is this supposed to be poignant?

It seems to me whenever someone tries to relate our misery through tales of poignancy, we come across as whining complainers.
 

Mij

Messages
2,353
Yes, and particularly a "former patient" who has been very active and in the public a lot advocating for MANY causes.
 

eafw

Senior Member
Messages
936
Location
UK
I understand the sentiment behind this, and it may be useful in some circumstances for publicity or the media ... BUT governments and clinicians should not be making decisions on who to treat depending on whether the patient is considered "deserving" enough (or any other sort of emotional pressure).

Yes, there is a huge waste of life and talent, and un-neccesarily so, as a result of this ilness, but just be wary of the trap that says they should help us because we're all model citizens who want to solve world hunger or some such thing.
 
Messages
15,786
They are parading a FORMER patient? I don't care who it is, I fear this is sending the wrong message right off the top.
If she is indeed not a current patient, she is still an extremely high-profile ex-patient, who presumably understands the plight of ME/SEID patients. We've been needing a celebrity spokesman for quite a while, and I'm extremely pleased that she's stepping forward to be one.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Nielk said:
I and many others in the U.S. do not accept this promotion of the IOM report in the guise that this will be a fundraiser for us.

The IOM report rams home the notion (novel to so many) that ME/CFS is a genuine, organic disease that isn't just malingering or 'all in the head'. It's a weapon to pressure the NIH. I think we should use it. I hope that those who agree will support this piece of advocacy.

Solve ME/CFS have managed, by using the IOM report, to get the media, congresspeople and major decision-makers interested enough in ME/CFS to come to this briefing. I hope that many of those who aren't sure about the IOM report or don't like it can see that it nevertheless presents a massive opportunity. Who wants to wait yet more years before something as major as the IOM report gets these people in through the door to be told how to help us?

Again, let's not let the perfect be the enemy of the good.

Moreover, tell delegates what sufferers would do were they well? Is this supposed to be poignant?

It seems to me whenever someone tries to relate our misery through tales of poignancy, we come across as whining complainers.

I certainly find the comments on Ryan's page poignant. Did you read them?

I understand the sentiment behind this, and it may be useful in some circumstances for publicity or the media ... BUT governments and clinicians should not be making decisions on who to treat depending on whether the patient is considered "deserving" enough (or any other sort of emotional pressure).

But the media are attending this thing and they love human angles to stories. If there's no human angle they might not cover it at all.

Like it or not, we need to appeal to people. I think this is a clever way to do it.
 
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duncan

Senior Member
Messages
2,240
I'd be careful about making any presumptions or assumptions concerning any so-called ex-patient. High-profiled individuals are not necessarily the same as highly representative.

More over, I suspect the delegates will want to know how she managed to get un-fatigued.

Any bets that a healthy diet and exercise regimen, back with sage advice from a qualified psychiatrist, played a role?
 

Nielk

Senior Member
Messages
6,970
The IOM report rams home the notion (novel to so many) that ME/CFS is a genuine, organic disease that isn't just malingering or 'all in the head'. It's a weapon to pressure the NIH. I think we should use it. I hope that those who agree will support this piece of advocacy.

It is a fallacy to state that the IOM report is the first one to have stated that this is a real disease. Anyone who has read the CCC and/or ICC can clearly see that this is a real and very serious disease.

Many who promote the IOM criteria make it seem like this is the first set of criteria that state that this is a real disease. On Dr. Oz's show, they stated this is a "new" disease that finally has a set of criteria. This is totally false! we already have and have had for many years a set criteria; the CCC that has been in use and that has shown that this is a real genuinely organic serious disease.

Why are people trying to re-invent the wheel with an inferior wheel?
 

eafw

Senior Member
Messages
936
Location
UK
But the media are attending this thing and they love human angles to stories. If there's no human angle they might not cover it at all.

I do understand it's a bit of a necessary evil but am just being particularly cynical today and really don't like the emotional manipulation. As long as people stay aware of that and know that when it comes to actual policy (rather than wider media/awareness campaigns) it needs to be informed by the science and good clinical practice, regardless of how "well behaved" the patient group are.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
It is a fallacy to state that the IOM report is the first one to have stated that this is a real disease.

I didn't state that and it's not my opinion.

Anyone who has read the CCC and/or ICC can clearly see that this is a real and very serious disease.

And the fact that the CCC and ICC were relatively little-read is the point here. The IOM report comes from a hugely prestigious institution and that's why it's being seen and read (even in summary) by so many more people. That's why it's coming as news to many that this is an organic disease - they simply hadn't read the science before, and the IOM report has a very simple take-home message: this is a devastating organic disease and it needs major funding. And it has the clout to reach people that the CCC and ICC publications never could.

Many who promote the IOM criteria make it seem like this is the first set of criteria that state that this is a real disease. On Dr. Oz's show, they stated this is a "new" disease that finally has a set of criteria.

I don't think that Dr Oz's opinion on anything (anything at all) is how we should judge medical knowledge.
 
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taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I'd be careful about making any presumptions or assumptions concerning any so-called ex-patient. High-profiled individuals are not necessarily the same as highly representative.

More over, I suspect the delegates will want to know how she managed to get un-fatigued.

Any bets that a healthy diet and exercise regimen, back with sage advice from a qualified psychiatrist, played a role?

I don't think we can or should be judging this high profile person till we know more about her case and what she did to get well. We shouldn't risk putting off anyone advocating for us due putting things out about them which may not be at all true.
 
Messages
15,786
I don't think we can or should be judging this high profile person till we know more about her case and what she did to get well. We shouldn't risk putting off anyone advocating for us due putting things out about them which may not be at all true.
Agreed. I don't recall her ever proclaiming a miraculous recovery due to juicing, Yoga, and/or tantric sex, so I'm quite happy to give her the benefit of the doubt :D
 

Nielk

Senior Member
Messages
6,970
Of course it's not the first report to state that, but it's the first "official one".
Establishing a connection between "those who promote the IOM" and Dr Oz is quite far fetched.

By official you mean what? That it has been rolled out to a big media blitz? Are you stating that other disease criteria that were not created by the IOM (since the IOM has never before created criteria for disease) are not official since they did not have this media blitz?

Many of our experts have been using the CCC for years for diagnostic purposes as well as research purposes.
 

Nielk

Senior Member
Messages
6,970
I don't think that Dr Oz's opinion on anything (anything at all) is how we should judge medical knowledge.

Of course we don't judge medical knowledge on what Dr. oz says.
If the concern is what people out there think, I hate to tell you that the public who watch Dr. Oz (and he has a huge following believe every word he says.
 

duncan

Senior Member
Messages
2,240
Well, I applaud each and every person who can give the benefit of the doubt, case unseen, to any person who claims to be a FORMER sufferer of ME/CFS, when that person will be representing the patient community in front of a potentially skeptical audience comprised of media and congressmen.

BTW, I am assuming when they say former patient, they are speaking about her being a former patient of ME/CFS. I bring this up only because as some of you may be aware, the IOM recommended to the IDSA they add to their Lyme panel, a patient - which the IDSA did - just, according to reports, not a Lyme patient. They added, literally, a patient. A patient of...something. Not quite sure what. But not Lyme.

Wouldn't want a similar thing to happen with this ME/CFS meeting.
 

Cheshire

Senior Member
Messages
1,129
By official you mean what? That it has been rolled out to a big media blitz? Are you stating that other disease criteria that were not created by the IOM (since the IOM has never before created criteria for disease) are not official since they did not have this media blitz?
Don't you think this is a bit of a caricature of what I said?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Of course we don't judge medical knowledge on what Dr. oz says.
If the concern is what people out there think, I hate to tell you that the public who watch Dr. Oz (and he has a huge following believe every word he says.

We are talking in the context of the upcoming meeting with media, congress reps and decision-makers, not the audience of Dr Oz.
 

Nielk

Senior Member
Messages
6,970
The IOM has no power to make anything "official". All they do is produce reports as recommendations.

HHS has not officially adopted anything. As a matter of fact, we have heard nothing yet from HHS.

Yet, there is all this media blitz and SMCI is arranging this event with congressional representatives.

This is very odd.