What common goals can everyone work towards, regardless of their view of the IOM report?'

oceiv

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@Sasha IMO, while the initial media attention has passed. U.S. media outlets are now primed to publish new stories on this disease. Once the press gets high traffic on a subject, they are more likely to publish future stories. At least that is how the main U.S. media outlets work. We haven't discussed using parts the report in this thread much. There were a few comments, but the discussion went in another direction. My guess is that using quotes would prove divisive. We can however say that the report just came out, but we're not taking a position. But also, we want a say in what happens next and present our say.

The positive environment also comes from the public and government members having seen those positive press reports. This is what I'm describing as a positive moment to exploit. How do people here think about this moment?

IMO, patient energy is limited and it's hard to do even one action. At this moment, I personally favor doing things at once to save energy. This is a group effort, though and the direction depends on all of us.

@aimossy Thanks and stick around to discuss next steps, if you'd like. This effort will take many people if it is to succeed. Everyone's guiding the direction. An action dependent on one sick person (like me, like all of us) will not move forward. An action buffeted by many is better set-up to succeed.

What does everyone think about doing one goal at a time or including all those goals in one action (like a petition)? Please also vote.

Edit: What is the link to the UK petition site? Link for U.S. petition site.

I'll leave the floor to others. Goodnight.
 
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medfeb

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Thank you Oceiv. Great job on pulling this together

Some food for thought on specific goals - possible modifications in bold and comments/questions underneath.
  • We need more biomedical research funding from our governments, including urgent need for biomarkers which are easy of access*
  • We need to take advantage of the publicity surrounding the IOM report to push for increased biomedical research funding using criteria such as the CCC that have the demonstrated selectivity and sensitivity**
Saw your note at the end about lack of consensus yet - maybe that's why such a statement wasn't here yet. Once resolved, I'd think it would be important to have here
  • Education programs are needed for med students and continuing education for all physicians, which does not include Fukuda or worse definition and does not include PACE style CBT and GET
One comment on this - as currently defined, I don't think the SEID criteria are ready for medical education either - too subjective, recommended assessment tools and criteria not validated, doesn't represent recently ill patients or severely ill or neurological symptoms, etc. I might emphasize that SEID criteria need to be flushed out and validated before they get broadly rolled out in medical education.
  • We need to fix the broken engagement model through which HHS interacts with this patient community. We need a fundamental change in the overall policy of governmental engagement with the patient community
  • SEID criteria needs to be revised to address gaps in areas like recently ill patients or severely ill or neurological symptoms and to add objective biomarkers where ready (e.g. NK Cell). Testing/validation of the SEID criteria is necessary.
  • Centers of Excellence are needed in order to properly-study and treat this systemic disease. COEs are also needed to diagnose more patients and train doctors/medical students
These are important to drive multi-disciplinary research and also to drive clinical trials
  • There are disagreements about the IOM report and it has been divisive. **Therefore, we're not taking a position on the report
Can we support the positive in the report - recognition of the issues, compilation of research, dismissal of psychogenic view, etc while raising concerns with the SEID criteria because of the concerns above?

Beyond that, there are some questions around the name and intent of SEID relative to CCC that need clarification. Hard to articulate but here's a stab
  1. the name itself - concerns with how its perceived. Concerns raised with it in a number of reviews
  2. mixed messages on whether SEID and CCC are intended to represent the same disease or not. If so, SEID gaps to be addressed as above. If not, what's the difference? IMO, doesn't make sense to separate into two diseases in this way.
  3. IOM stated SEID is intended to replace the term "ME/CFS." But CCC cohorts are not SEID cohorts. What term will researchers use for studies using CCC cohorts. Point being, it will get confusing if clinical use uses the term SEID and research uses the term ME/CFS or if some people rename CCC cohorts SEID while others call it ME/CFS. That kind of semantic mess is what we are trying to escape.
  4. at the least, there's a lack of clarity on how this is supposed to work that needs to be thought through
 

Sasha

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@Sasha IMO, while the initial media attention has passed. U.S. media outlets are now primed to publish new stories on this disease. Once the press gets high traffic on a subject, they are more likely to publish future stories. At least that is how the main U.S. media outlets work. We haven't discussed using parts the report in this thread much. There were a few comments, but the discussion went in another direction. My guess is that using quotes would prove divisive. We can however say that the report just came out, but we're not taking a position. But also, we want a say in what happens next and present our say.

The positive environment also comes from the public and government members having seen those positive press reports. This is what I'm describing as a positive moment to exploit. How do people here think about this moment?
That's an interesting point. But I think there were too few stories to affect many people, and in too few publications, with politicians unlikely to have read or remembered them unless they had a special interest. To influence politicians, I believe we'd need more than us just presenting our case: I think we'd have a much bigger impact if we cited reports that supported that position, particularly the IOM report because of its prestige.

I'd like to know what others think of that - it seems to me that we have this huge weapon that we could be using and that it's the thing that will make the difference.

I think it's the thing that will also get patients behind any petition. They've seen and signed endless petitions on this issue. I think they'll need to see something new and powerful in a petition to get behind it in the numbers we need. Just my opinion, though.

An action buffeted by many is better set-up to succeed.
I think you meant 'buffered' but with so many individual points I'm concerned 'buffeted' would be true! :)

What does everyone think about doing one goal at a time or including all those goals in one action (like a petition)? Please also vote.
I think that we here are too small and unrepresentative a group to come up with a list that won't include items that will set somebody off. People can get very vocal and focused on opposing a small element in a wider thing and we've seen a lot of advocacy undermined in that way in the past. It doesn't mean that we shouldn't do it but it would be wise to take that into account, I think.

At the moment, I'm finding it a bit hard to vote on the list as a whole (a very helpful list!) because things that we would call for are mixed in with other items. I'm wondering if it would help to separate them out.

Here's the UK site:

http://epetitions.direct.gov.uk/

It would need 100,000 signatures to get a debate in parliament but of course even below that level, it could get attention.

A serious petition, well-planned and with the right people behind it, could get a lot of signatures. Personally, I'd put serious effort into one that mentioned the IOM report because it's so positive about the organic nature of the disease and from such a prestigious institution: without that, I don't think we have anything much new to say. Lady Mar was able to use it in her advocacy to the recent Royal School of Medicine meeting on ME/CFS (see here), and it's been having a good effect in the UK.

I'm sorry to harp on about this and I really don't want to antagonise those who don't like the IOM name and criteria: but if we don't use the positive aspects of such an important and prestigious report to get the maximum number of patients behind us, let alone those on the receiving end of the petition, I think we're really shooting ourselves in the foot.

Perhaps it would help if the IOM report wasn't the only thing we mentioned. Something like, 'Several recent reports have made it clear that ME/CFS is a devastating organic disease that does not have a psychological cause and is seriously underfunding, including reports from the IOM and the P2P [proper titles of course, with a list of others and the agencies who funded them].'

We need to not let the perfect be the enemy of the good here, and I think that that applies to perfect agreement too. We want the maximum number of patients to sign up to a powerful petition that calls for funding, and I think that we'd get more signing up for a call for funding that mentioned the IOM report (in a way that respects people's concerns about it) than one that doesn't. The latter might get broader agreement but I think it would also get fewer people bothering to sign it if they saw it; and I think that fewer people would see it because it wouldn't be so widely circulated among patients.
 

alex3619

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We need a medical specialty to be assigned (Invest in ME expressed this point well; the specialty will not be psychiatry or psychology)
I agree we need this, there has long been some support for this, or at least for several years now. However it is not time. Which specialty will accept us? Not neurology. Not immunology. Not gastrenterology. Etc.

To be accepted we need one, and preferably two, of two things. A diagnostic test and a useful treatment, perhaps more than one treatment.

Now if Ampligen were approved we might go for Immunology. Rituximab might lead to immunology or rheumatology.

On creating our own specialty, its probably a good goal. Steps have been made along those lines, by attaching some research centers to medical schools. Its not enough. We still need a diagnostic test and/or a treatment.

So this is premature to enact. It is however past time to begin seriously discussing it. I think the body best set up to start this is the IACFSME.
 

alex3619

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I'd like to know what others think of that - it seems to me that we have this huge weapon that we could be using and that it's the thing that will make the difference.
This is the best tool we ever had. Ever. I am hoping in three years we will get Rituximab research as a tool, and that the 2 day CPET research will be stronger, and there will be blood tests. However right now we only really have the IOM report for impact.
 

Sasha

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I agree we need this, there has long been some support for this, or at least for several years now. However it is not time. Which specialty will accept us? Not neurology. Not immunology. Not gastrenterology. Etc.
I think there's also the issue of whether the people we're petitioning have the power to action all of the items on the list. I don't know that anyone has the power to force a medical speciality to adopt us.
 

Sasha

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Personally, my one goal is a fundamental reboot in all facets of U.S. federal public health policy toward this disease. The IOM report and the P2P report in its own way demonstrate the failures as does the lack of any meaningful outcomes in thirty years.
Do you see the path to that as a list of demands, rather than a single one (that is, you're saying you'd prefer a list)?
 

Sasha

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Nobody does. Anywhere. That does not mean it cannot be a long term goal, and it does not mean we cannot work toward our own specialty, perhaps a multisystem disease specialty.
I know, but I'm thinking in terms of whether it has a place on oceiv's list.
 

taniaaust1

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Thank you Oceiv. Great job on pulling this together

Some food for thought on specific goals - possible modifications in bold and comments/questions underneath.
  • We need more biomedical research funding from our governments, including urgent need for biomarkers which are easy of access*
  • We need to take advantage of the publicity surrounding the IOM report to push for increased biomedical research funding using criteria such as the CCC that have the demonstrated selectivity and sensitivity**
Saw your note at the end about lack of consensus yet - maybe that's why such a statement wasn't here yet. Once resolved, I'd think it would be important to have here
The personally think the best thing this report should be used for esp when its getting attention still, is to use it to push for biomedical research esp in trying to work out the subgroups of this illness as this report clearly pointed out they weren't even able to come up with anything on subgroups due to not enough research. (that way even those who don't like the new criteria probably still will feel okay to push subgroup research of this as I think all could agree we could learn a lot from that kind of research).

It may well turn out to be the lack of the subgrouping why there is no clear biomarkers for all. Research with subgroups could add a lot more clarity to our illness and even end up pulling different things out. No subgroups= no clear biomarkers.

We desperately need a lot of research to be going into this area and the IOM report supports this and even those who don't agree with the IOM report could support this.
.......

We are lucking out with the petitions right now as half the community will agree on something while other half doesn't, so lower numbers are supporting things. Its a good idea to find something all can support and help push.
 
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joshualevy

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I think @joshualevy would be especially interested in @Nielk 's comment.

How can this history inform our success?
If you mean comment #83, then no, I did not find it interesting. (Even if it is true.) That is because I think that history can only tell us how we got where we are. It can not tell us how to move forward, or the price of being where we are. The absolute best history can tell us is "we tried X before, and it did not work" (or the reverse). Yes that's helpful, but only in a very limited way.

The real situation is "we are in a dead end cul-de-sac, which we got into because of actions A, B, C and D (all of which were good decisions made for the best of reasons)" Knowing the details of decisions A, B, C, and D does not directly help us get out of the dead end. It creates long discussions and heated arguments, but the real question is how to move forward, not how we got here.

Joshua Levy
 

Nielk

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HHS has not listened to anything anyone outside of the government has said, in the past 30 years. We have signed petitions, sent letters, gave comments about the need for funding for research time and time again. CFSAC authored several recommendations to the Secretary of HHS urging for more funding. Each of these recommendations was refuted.

The IOM report did not reveal anything new. The funding dilemma has been very clear all along. Anyone with a computer can clearly look at this list http://report.nih.gov/categorical_spending.aspx and see how CFS is at the bottom. HHS knows that and Congress know that. They also know how many suffer from the disease and what the burden to the economy has been. Experts, advocates and patients have been advocating for funding commensurate with other diseases with similar burdens.

The only thing that will make a difference in my opinion is mass demonstrations. We need to embarrass them publically. We need to show how we have been abused for three decades and we will not take it any longer.

As far as uniting for one goal.

I can agree with massive funding - over $100 million for research using the CCC criteria.

I can't agree with quoting the IOM study because to me, even though I can agree with parts of the report, the whole process has been ill gotten. I don't agree with the government sponsorship or the parameters set by HHS that forced a specific outcome. I would not sign something that quotes the IOM report. There are plenty of other quotes that we can find from worldwide experts and other scientific papers to support our quest.
 

Sasha

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HHS has not listened to anything anyone outside of the government has said, in the past 30 years. We have signed petitions, sent letters, gave comments about the need for funding for research time and time again. CFSAC authored several recommendations to the Secretary of HHS urging for more funding. Each of these recommendations was refuted.

The IOM report did not reveal anything new. The funding dilemma has been very clear all along.
What's new is the fact that a body as prestigious as the IOM, in a report funded by the major decision-makers (HHS itself, NIH, AHRQ etc.) has said (a) this disease is organic, not psychological and (b) it's severely underfunded.

That's the thing that's new and it's who is saying it, despite who paid them, that makes the report such a weapon, including against HHS itself (though NIH presents an excellent target).

The only thing that will make a difference in my opinion is mass demonstrations.
We've never been able to pull off even a moderate one because we're so sick. I know that MEAdvocacy want to hire people to stand in for patients at demos but MEAdvocacy is taking a firmly anti-IOM line, which I think is likely to cost it the support of people who broadly favour the report - and if it doesn't have enough support, it won't have the money to pay for demonstrators.

I can agree with massive funding - over $100 million for research using the CCC criteria.
I'd agree to that.

I can't agree with quoting the IOM study because to me, even though I can agree with parts of the report, the whole process has been ill gotten. I don't agree with the government sponsorship or the parameters set by HHS that forced a specific outcome. I would not sign something that quotes the IOM report. There are plenty of other quotes that we can find from worldwide experts and other scientific papers to support our quest.
I don't think that these other quotes would carry anything remotely like the weight that citing the IOM report does (we don't need to quote it, just cite it, but I understand your objection might extend to that).

We've already had advocacy quoting those other kinds of thing and we've got nowhere. I've signed every petition like that with a sense of 'this again: it isn't going to work' and it hasn't.

Nielk, if I thought that what you were suggesting would work I'd support it because the more people can get behind it the better, but I honestly think it's just more of the same that we've done over and over before and that has failed.

I also made the point earlier that if we don't cite the IOM report, I think we're unlikely to excite many patients about joining in on any action because they'll be wondering why they should bother (again) if nothing is new.

I think there's a real tension here between getting everyone on board regardless of their stance on the IOM on a weakened message, and getting possibly wider support in terms of numbers for a petition that cites the IOM report.

What do we want? The biggest petition possible or the one that the broadest range of people can support? Because they might not be the same thing.

Or do we want two petitions? One that cites the IOM report and one that doesn't? Best of both worlds?

@oceiv - not sure if my focus on this funding issue is too narrow for your purposes on this thread but it's a fairly key issue if it was to be a stand-alone project (which I'm not sure is what you want, rather than a manifesto of several points).

I wonder if we should wait for oceiv before we discuss this further in case I'm dragging us all down a rabbit hole. I'm a bit worried I'm off-topic by looking just at one element of the list.
 
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Ember

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I'd like to know what others think of that - it seems to me that we have this huge weapon that we could be using and that it's the thing that will make the difference.
Or do we want two petitions? One that cites the IOM report and one that doesn't?
I'm a bit worried I'm off-topic by looking just at one element of the list.
Your lobbying to leverage the IOM report seems off-topic on this thread: “What common goals can everyone work towards, regardless of their view of the IOM report?” Those opposed to the IOM report will likely support MEadvocacy.org.
 

Sasha

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Your lobbying to leverage the IOM report seems off-topic on this thread: “What common goals can everyone work towards, regardless of their view of the IOM report?”
Not necessarily - it's not clear that everyone (or even most) who oppose the IOM report's name/criteria recommendations would oppose its being cited in support of (for example) funding.

I'm content to let @oceiv decide this, as the mover and shaker here.
 

Snowdrop

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@oceiv

Thanks for guiding this thread and helping us think this through.

I struggle with keeping up especially with a very active and detailed thread so have only scanned the last page or so.
Would it be a useful idea once something is agreed upon to send our 'wish list' to the various advocacy organisation's that exist in as many countries as possible for them to have the opportunity to get on board with the program and assist us?

I'd include the somewhat (and in some quarters) dreaded CAA.
 
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