CFSAC Meeting Dec. 3rd & 4th, 2014

[Sing]

I expect that many of the people who have opposed our progress in the past are not rigid, fire-breathing partisans anyway, but rather political animals who swing whichever way the wind seems to be blowing. So the more that we can do to give the impression that the wind is blowing the other way now, the better.

 

[Sing]

@Sing, its starting to happen, but to be effective we need much more. We also need to back our researchers. Without our support it will be harder for them to take as stand.

I agree. I am going to make a contribution this month to at least one of the organizations I particularly respect. Maybe those who can't contribute money can write a letter to the newspaper or do something else so people know what the story is.

 

[medfeb]

@Sing, its starting to happen, but to be effective we need much more. We also need to back our researchers. Without our support it will be harder for them to take a stand.

In addition to backing our researchers, I think we need to go back to our legislative leaders in a much bigger way than we have before, at least recently. HHS isn't going to change their current misguided policy and direction without being told to do so.

And to get legislative attention, we also need to find and take advantage of media opportunities so legislative leaders have reason to pay attention (see Craig Maupin's blog on this - a great read).

As Alex said, its starting to happen but we need to push wherever we can whether it be contributions, letters to media, letters to our congressional leaders - or all three

 

[alex3619]

In addition to backing our researchers, I think we need to go back to our legislative leaders in a much bigger way than we have before, at least recently. HHS isn't going to change their current misguided policy and direction without being told to do so.

And to get legislative attention, we also need to find and take advantage of media opportunities so legislative leaders have reason to pay attention (see Craig Maupin's blog on this - a great read).

As Alex said, its starting to happen but we need to push wherever we can whether it be contributions, letters to media, letters to our congressional leaders - or all three

We have known that this is needed all along, but nobody has yet figured out a way to make it happen. Plenty have tried. I do agree we need to push, but how do sick and financially challenged people get organized to make this happen?

 

[medfeb]

We have known that this is needed all along, but nobody has yet figured out a way to make it happen. Plenty have tried. I do agree we need to push, but how do sick and financially challenged people get organized to make this happen?

You are right, of course, Alex3619 and I apologize if my post came across like I didn't recognize that people have been pushing hard for a long time.

Your question deserves a thoughtful response but my brain has turned off. i'll come back tomorrow

 

[medfeb]

To Alex3619's question…
I've only been involved with ME for a little over three years so please let me know where this is repeating historical ground…

I apologize up-front for the length of the post.

FIrst, I deeply appreciate the health limits of this community. I am healthy but my son is sick and I also work with a lot of patient advocates whose ability to advocate on their own behalf is bound by the limits of their disease. Getting healthy people involved - and more financial support - is critical and remains one of the biggest challenges.

But leaving that critical issue aside for the moment, It seems to me that we have a range of activities happening over the next few months that will reach the ears of the media and the legislative leaders that we can leverage to gain the attention that we want to see. For instance:

1. P2P, AHRQ Evidence Review and IOM will all be published in the next few months and we know they will be broadly publicized through the media. Even if they were perfect (which I don't expect), there would still be gaping holes around funding, pediatrics, research case definition, ICD categorization, etc that we would probably want to push . But from what we have seen with at least AHRQ and P2P so far, we can anticipate deep flaws that can be leveraged just because they are so bad.​

2. We have two films coming out - Unbroken and the Forgotten Plague. Both are useful in different ways. I can't help but think of the parallels between Unbroken and the unimaginable adversity that this community has faced. I believe that Laura is being interviewed by I think Tom Brokaw sometime this month.​

3. We have gotten some good press coverage on recent studies, particularly Stanford, which feels different than coverage a few years ago. And we've also seen some recent articles in mainstream press that have talked about the political issues.​

4. We have outright violations of FACA and FOIA, allegations of intimidation and a documented history of HHS ignoring both CFSAC recommendations and legislative appropriations language for investment in this disease. Perhaps even more damning is the fact that HHS has not achieved a single tangible outcome for patients in thirty years.​

5. And finally, while I recognize and value that we have differences on tactics, we also have a shared outrage at what is happening and more importantly, an increasingly common language on how we talk about the disease and the political issues. For instance, at the IOM public hearing last January, it was striking that the advocates all called the disease ME and called for the CCC and/or PEM as a hallmark, mandatory symptom. At this week's CFSAC, all 15 public commenters shared an outrage over what was happening - with everything - a fact noted by one of the CFSAC members.​

I'm sure there is more - 3 scientific conferences this year, crowd sourcing and private funding, UK and Norwegian trials on Rituxan, Lipkin's pointed comments about the review process for this disease but you get the idea.

So maybe the question is how to best leverage the opportunity that this collection of events creates in a strategic way? Do we have a tipping point in all of this that if we push in the right areas, will finally tip the whole paradigm? We know that playing Whac-a-mole with the latest HHS effort isn't working.

Here's a few ideas but I really want to through them out as food for thought and a question to everyone...

• letters to media, even local papers that highlight the story behind Unbroken - the disease, the personal and community impact, what science is telling us
• see how to get Forgotten Plague out there when it comes out. Not sure what Ryan has planned or the exact timing so that would need to be looked at
• letters, twitter, etc to legislative leaders that highlight the lack of progress, the waste, the bad science and how disabled people are being treated. HHS spends just 0.03% of the yearly economic impact. As a recent Forbes article said, that is incredibly short-sighted. Lay out the big picture problem, the cost to society and what needs to be done. MEAdvocacy has a mechanism to send targeted letters and I think the basic story can be laid out fairly easily at this level.
• contact investigative journalists to get them to look at this story. I think this requires some level of documentation of the story because otherwise its too hard to pick the story up and write about it. Jennie SPotila's and Jeannette Burmeister's efforts are really helpful here. This is also where I've spent most of my efforts.
• As Llewellyn King suggested, organize a march on D.C. in the spring. Others have suggested a demo. But it needs to be large - twenty or fifty people isn't enough - so will require a lot of pre-planning

I'm sure there are others - ACLU on the treatment of disabled people? etc. MEAdvocacy is raising funds to hire a PR firm.

The point being, if we look at where we are today and what's coming, where and how can we best use our limited community energies in a way that tips the situation - and ideally gets healthy people involved for future capacity?

RIght now, we have limited capacity that is an inescapable reality. If we can only do two or three things, what is the most important place to focus our limited energies?

 

[caledonia]

@alex3619 @Sing The National PR Campaign for ME will solve all of these problems. We are only $1000 short of being able to get started in January.

January is particularly critical because we have an opportunity to approach new Congress people who could potentially become our champion. That means getting us decent research funding for years to come. This was talked about by Llewellyn King in his ME/CFS Alert video on lobbying. Next opportunity - two years from now...

We will also be doing monthly demonstrations, be in the press - major newspapers, major blogs, major morning tv shows, the works. This will get the attention of the NIH. Right now we're invisible. We will start a national dialogue. The evils of 30 years will be exposed. We will get the name ME with a true ME definition. We will divest ourselves of "CFS" and all the negativity that that entails.

Read the proposal here: https://meadvocacy.nationbuilder.com/donatepr

Then please donate. If you can't donate, please spread the word!

Suggested post for Facebook, forums, email, etc. You can modify as you see fit:

Are you as disgusted and disgruntled as I am about how badly the Department of Health and Humans Services treats ME/CFS patients? That's why I donated to the National PR Campaign for ME/CFS.

We don't have to take this lying down! The campaign plans to hire a professional professional public relations firm to bring our story to the media and policy makers in Washington.

Click here to read the proposal: https://meadvocacy.nationbuilder.com/donatepr

Please share!!!

 

[alex3619]

I deeply appreciate the health limits of this community. I am healthy but my son is sick and I also work with a lot of patient advocates whose ability to advocate on their own behalf is bound by the limits of their disease. Getting healthy people involved - and more financial support - is critical and remains one of the biggest challenges.

You are exactly the kind of person who can help make things happen. Its parents who do most of the heavy lifting for children (and presumably adults, though less so) dealing with autism, and it appears to me the most effective advocates for ME are typically family members of the sick or at the milder end of the spectrum.

But from what we have seen with at least AHRQ and P2P so far, we can anticipate deep flaws that can be leveraged just because they are so bad.

I agree. I have thought so all along. It was highly unlikely we could stop or appreciably affect these reports, but we can after analysis show how flawed they are.

at the IOM public hearing last January, it was striking that the advocates all called the disease ME and called for the CCC and/or PEM as a hallmark, mandatory symptom. At this week's CFSAC, all 15 public commenters shared an outrage over what was happening - with everything - a fact noted by one of the CFSAC members.

This is a fractured community, but some points come through strongly that we can all agree on. This is a potential bridge for creating unified advocacy.

So maybe the question is how to best leverage the opportunity that this collection of events creates in a strategic way?

That is indeed the question, and it gets discussed almost every year for at least the last five years. I think this goes back to the 80s though. There are two parts to the problem, one is scientific and the other political, though perhaps I should add social as well. The science is where the cure is coming from, but a dearth of funding to get there is largely a political and social problem.

The brakes to getting a cure are mainly political and social, though the biomedical complexity of ME is extremely high. Itwill probably remain so until we have almost a complete scientific understanding when suddenly we might have a Eureka.moment when it all falls into place ... so long as we don't go running through the streets naked like Archimedes is said to have done.

On media, we have been trying these tactics for nearly three decades. I will reply later to that, though perhaps we need a new thread. There are potential things that can be leveraged, but they are limited and don't come along all the time.

A social media storm is one thing we really want. I think that media of all kinds works better with hopeful stories, cute or funny stories, and scandal. We have been playing this as a rational game, presuming the science dominated, far too much. The recent revelations can be discussed as a scandal with considerable justification. The ineptitude of many involved is astonishing.

The point being, if we look at where we are today and what's coming, where and how can we best use our limited community energies in a way that tips the situation - and ideally gets healthy people involved for future capacity?

I have started several threads like this over the last five years. It is indeed difficult to do. Many options have been discussed on how to do this best, including things like what breast cancer do with hands, we could have little shadow people icons, or wheelchair bound, or lying down, or something, each with a name.

To give some flavour of the difficulties, I was a member of an ME, CFS, fibro society that collapsed. It had 800 members. It only required a few people to keep it running. At one point everyone was too sick. End of our state society, it folded and the assets were handed to a regional society.

I think we need a thread on how to capture media attention., and link to other threads including about Llewellyn King.

 

[alex3619]

January is particularly critical because we have an opportunity to approach new Congress people who could potentially become our champion

If we can create a climate in which this happens we will have made a start. Its only the beginning however.

Stanford got its story out largely because they have a public relations effort .Its possible we can leverage more media attention through public relations, but there is immense inertia in the media generally. I have some thoughts along these lines, but this is not the right thread.

 

[Andrew]

<sigh> I just cannot keep up anymore. I'm glad to see people are still carrying the torch.

 

[Sasha]

@alex3619 @Sing The National PR Campaign for ME will solve all of these problems. We are only $1000 short of being able to get started in January.

January is particularly critical because we have an opportunity to approach new Congress people who could potentially become our champion. That means getting us decent research funding for years to come. This was talked about by Llewellyn King in his ME/CFS Alert video on lobbying. Next opportunity - two years from now...

We will also be doing monthly demonstrations, be in the press - major newspapers, major blogs, major morning tv shows, the works. This will get the attention of the NIH. Right now we're invisible. We will start a national dialogue. The evils of 30 years will be exposed. We will get the name ME with a true ME definition. We will divest ourselves of "CFS" and all the negativity that that entails.

Read the proposal here: https://meadvocacy.nationbuilder.com/donatepr

Then please donate. If you can't donate, please spread the word!

Suggested post for Facebook, forums, email, etc. You can modify as you see fit:

I think the fact that you're only $1k short is a great reason to have a new thread called something like, 'US National PR Campaign for ME only needs only $1,000 more to start in Jan!' and repeat your above message as the first post - people always like to jump on a successful bandwagon.

 

[Sing]

I contributed!

 

[Nielk]

Many if not most of the researcher and doctor participants in CFSAC probably have good intentions. Doctors and researchers do have to navigate difficult political waters ... its not just about the science. I am starting to think that if a large cohort of researchers and doctors acted as a block, outside of CFSAC, it might have more effect. I am not sure of this however.

Perhaps an independent body would work better, one not bound by CFSACs rules. It could then make its findings very public. This however leads to issues of funding .. .first, who will fund the body? Second, would this kind of action negatively impede funding and grant applications for biomedical research into ME and CFS?

Our doctors and researchers have acted. In 2003, they created the Canadian Consensus Criteria (CCC) and in 2011, they created the International Concensus Criteria (ICC). Unlike all other criteria for diseases, where it is the private expert medical experts who devise criteria for diseases, which is then adopted and accepted by the government health agencies, ME (or ME/CFS as they call it) has been singled out in that HHS refuses to accept the diagnostic criteria adopted by the expert medical group.

When HHS first announced that they have contracted with the IOM in order to work on creating clinical diagnostic criteria for ME/CFS, the medical experts in the field were up in arms and wrote a letter to HHS, signed by the top 50, declaring that they have all unanimously adopted the CCC as the diagnostic criteria for ME/CFS. They urged HHS to cancel the contract with the IOM and to accept and adopt the CCC as well.

HHS in turn, snubbed the medical establishment, refused to heed their letter and not only forged full forced with the IOM but, actively devised the P2P process in order to murky the waters of the research definition as well.

The questions remains: Why is HHS so determined to throw ME/CFS patients under the bus? Why couldn't they simply listen to the medical doctors and adopt their criteria as they have done with all other diseases?

Now, not only are they throwing us under the bus, but, they want our help to do so!!!

Sue Levine at last week's CFSAC meeting spoke for 15 minutes about the preparations for the big "roll out" for the final report of the P2P as well as preparing a media blitz for the IOM results. They need many venues for their propaganda and Phoenix Rising was mentioned as one of them.

You might ask, how is it that HHS has refused to adopt the CCC, stating that it is not perfect, yet they are ready to roll out the IOM criteria, sight unseen? They are ready to adopt the IOM criteria. They are getting ready to make the changes to the CDC website, including revising the CDC tool kit, before even knowing yet, what the cold facts are!

ME/CFS stakeholders, experts, patients and advocates have been pleading with the CDC for years ro revise the CDC toolkit with no success. Yet, the CDC is ready to revise the toolkit based on the work of the IOM, contracted and paid for by HHS and involves many non-experts.

We need to fight this and luckily MEAdvocacy has come up with the tool to do so. They only need another $1,000 to start their National Public Relations Campaign to let the patients' voice be heard. We need our own media campaign to fight HHS' campaign.

Are we going to allow Phoenix Rising to be part of HHS' blitz campaign promoting IOM and P2P?

 

[Sing]

I agree with you that the CCC or ICC should have been accepted, and agree that we ought to support the National Public Relations Campaign.

Two questions I have though are these:

Is it true that the criteria for diseases in all other cases have been the medical experts?

And secondly, Is the intention of the CFSAC to promote the final report of the P2P and IOM results, or is it to inform? Inform, to me, seems neutral--we will be doing that, the informing, ourselves anyway. But promotion, if that is the case, suggests that these results are beyond scrutiny or question which is out of bounds--both unscientific and offensive.

 

[caledonia]

I contributed!

Thank you!

 

[caledonia]

I think the fact that you're only $1k short is a great reason to have a new thread called something like, 'US National PR Campaign for ME only needs only $1,000 more to start in Jan!' and repeat your above message as the first post - people always like to jump on a successful bandwagon.

Yes, I really need to do an "campaign update". That is actually my goal for today. We now only need $124 to reach our goal of $5000!

 

[Sasha]

Yes, I really need to do an "campaign update". That is actually my goal for today. We now only need $124 to reach our goal of $5000!

Very glad to hear that this is going so well - congratulations!

 

[alex3619]

Our experts have indeed acted on occasion to advance the cause, perhaps more than with other diseases, or at least most other diseases. I was one of the advocates who signed the open letter supporting them in relation to the CCC/IOM.

My point is its not enough. Anything that can facilitate their capacity to cooperate that we can do we should be considering. I do understand though that they have other roles, clinicians treating patients, and researchers advancing the science. Its not easy for them to do more.

The IOM report might not go the way that people setting it up hoped though I cannot be sure of this. They failed to get a result with the last IOM GWI report. However the P2P is headed straight for a disaster unless we get lucky.

CFSAC, if it were to work, needs to be much more aggressive, which is very difficult to do when you are bound within the rules.