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

[Nielk]

So at this stage, if we called for more research into CCC-defined ME or ME/CFS because the IOM report makes it clear that it's an organic disease and that research into it is seriously underfunded, you'd be happy with that?

Would anyone object to that? Or are there further issues that need ironing out?

The SEID issue is anyway perhaps moot at this stage because those are clinical criteria and haven't as yet been ratified.

CFSAC has called for new RFAs and more funding commensurate with the disease burden for the past 10 years and has been refused by HHS.

Just this past June, 2014, CFSAC recommended an RFA and the reply from HHS was NO.

See recommendation #2

.

Many of you are saying that now is an opportune time to ask congress to step in for us in order to put pressure on NIH for more funding because we have the media attention due to the IOM. Even though I do not agree with the IOM criteria and name, I agree that we are having a lot of media attention.

The question is can we take advantage of this media attention of the IOM report and try to promote funding? I, personally can get behind it if it is clear that the research is biomedical using the CCC. My problem is that if by doing so, we are promoting the IOM report, including the criteria and name, I cannot be part of it.

We can get behind this and for example quote Andrew Kogelnick saying " On a per patients basis, ME/CFS is dead last on the NIH roster". We can quote CFSAC recommendations for funding etc.. Do we need to quite the IOM report?

 

[medfeb]

The SEID issue is anyway perhaps moot at this stage because those are clinical criteria and haven't as yet been ratified.

I don't think the SEID issue is moot. A case has been made for simpler diagnostic criteria, a need that the InvestInME response to IOM acknowledged. And we know that clinical criteria can be broader than research criteria. However, both of them should represent the same disease and ideally, I would think there should be a declared "linkage" between the research criteria and the diagnostic criteria.

We don't have that right now because the names are different, there have been some confusing statements on whether/how SEID and ME criteria fit together or not and the SEID criteria, as currently defined, are subjective and could end up in practice diagnosing a substantially different population.

 

[medfeb]

The question is can we take advantage of this media attention of the IOM report and try to promote funding? I, personally can get behind it if it is clear that the research is biomedical using the CCC. My problem is that if by doing so, we are promoting the IOM report, including the criteria and name, I cannot be part of it."

I think we can and should break down the different key messages and needs from the IOM report. The IOM report makes a clear case for a fundamental, across the board change in federal health policy toward this disease - not just in funding but in medical education, how this community is engaged, etc. InvestInME made really good points on this.

At the same time, there are legitimate concerns with the criteria and name that need to be addressed. We can progress both the opportunities and the concerns if we don't take an all or nothing view. Doing so has the advantage of allowing progress to be made on some areas while the SEID concerns are addressed. e.g. NIH can increase funding now for biomedical research with CCC and CDC could put up a blackbox warning about exercise and remove recommendations for CBT and GET.

 

[Sasha]

CFSAC has called for new RFAs and more funding commensurate with the disease burden for the past 10 years and has been refused by HHS.

I know - that's why we need something new and powerful to give us impetus and for many of us, that's the IOM report.

Many of you are saying that now is an opportune time to ask congress to step in for us in order to put pressure on NIH for more funding because we have the media attention due to the IOM. Even though I do not agree with the IOM criteria and name, I agree that we are having a lot of media attention.

Actually I don't think it's to do with media attention, for most people - it's to do that we now have an HHS/NIH/etc.-funded report by a prestigious institution that we can beat NIH over the head with, preferably via Congress.

The question is can we take advantage of this media attention of the IOM report and try to promote funding? I, personally can get behind it if it is clear that the research is biomedical using the CCC. My problem is that if by doing so, we are promoting the IOM report, including the criteria and name, I cannot be part of it.

We can get behind this and for example quote Andrew Kogelnick saying " On a per patients basis, ME/CFS is dead last on the NIH roster". We can quote CFSAC recommendations for funding etc.. Do we need to quite the IOM report?

But as you said:

CFSAC has called for new RFAs and more funding commensurate with the disease burden for the past 10 years and has been refused by HHS.

So we've done all that. We need to be using the new, powerful thing - which is the IOM report.

I know that you don't want to support its recommendations on the name and the criteria. But would a call for funding based on the report's identification of ME/CFS as clearly organic and the report's recommendations for more funding be something that you could support, if that call made it clear that patients weren't necessarily agreed on the name or the definition?

 

[usedtobeperkytina]

I think we have areas of advocacy all can agree to: Call for more research funding (both P2P and IoM says so), put RFAs out for the type of research both said is needed (longitudinal, biomarkers with large cohort, comparison with other diseases, mixed demographics, better phenotyping), and say that Fukuda and Oxford should no longer be used for research or clinical situations because neither requires PEM (activity or stressor-induced sickness symptoms).

We seem to disagree on whether SEID or CCC or ME-ICC should be used and for what. But I think we all agree that Fukuda and Oxford are inadequate. IoM says ASISS (what others say is PEM) is required to identify patients, even in a clinical definition, and P2P said Oxford should be retired. So we have some scientific backing to call for the discontinued use of both of those in both research and clinical care.

I would even make it a campaign: Fukuda must go! Fukuda must go! Fukuda must go! Kill Fukuda! Kill Fukuda! Down with Fukuda! Down with Fukuda! (My apologies to the man named "Fukuda.")

I would say that Fukuda is still the most commonly used criteria in research. And, as we know, it is too broad. If we push for the NIH to not fund studies that use Fukuda or Oxford because now two government-funded studies show these do not identify patients with this disease, I think we may have some progress.

I know it leaves out telling them what to do or what to use, but we can't agree on that among ourselves or experts. But whether in clinical use or research, anything requiring ASISS I think we all agree would be better than Oxford and Fukuda.

 

[jimells]

(My apologies to the man named "Fukuda.")

He deserves a public thrashing not an apology. Here's an interesting document I found yesterday:

And here's where I found the documents:

The truth is far more complex. In a document obtained by the CFS Report (see links below), Stephen E. Straus, widely known as the creator of the “fatigue syndrome” concept, discussed his hopes for 1994 redefinition of CFS with the CDC's Keiji Fukuda. The Straus/Fukuda letter, written after the submission of the new definition for publication, is frank. Straus predicts the new definition would cause “the notion of a discrete fatigue illness” to “evaporate”. Once a concept of a distinct disease evaporates, Straus claims a framework of idiopathic fatigue -- a symptom that falls short of a distinct disease -- would be left behind. Straus predicts the new definition may lead to the “entire abandonment” of CFS. It is a strange prediction, to champion a definition that leads to the future abandonment, evaporation, and discreditation of that which one claims to want to define.

Anybody here familiar with Craig Maupin? He has some very interesting historical material on his website, including interviews with former NIH officials.

And a rhetorical question: does anybody here disagree with, "The NIH hates us"?

I believe this document supports my allegation that HHS is trying to redefine the illness out of existence while we are busy fussing over names and definitions. It certainly supports the allegation that they have attempted to do so in the past.

 

[Valentijn]

He deserves a public thrashing not an apology. Here's an interesting document I found yesterday:

And a rhetorical question: does anybody here disagree with, "The NIH hates us"?

I believe this document supports my allegation that HHS is trying to redefine the illness out of existence while we are busy fussing over names and definitions. It certainly supports the allegation that they have attempted to do so in the past.

Agreed, regarding the past. And I think they likely hoped to do it in the present with the IOM, but that rather unexpectedly backfired on them.

Hence why I anticipate that getting them to adopt the IOM name and criteria, and implement any of its other suggestions, will be a major battle.

 

[jimells]

Hence why I anticipate that getting them to adopt the IOM name and criteria, and implement any of its other suggestions, will be a major battle.

The US government has a very long history of commissioning reports that are promptly forgotten. The recent US Senate report on torture comes to mind. Given all the recent media fuss over the IOM report, it will be interesting to see how long it takes to bury this one. It seems like the P2P report has already been flushed down the memory hole.

Is there a definitive political history of this disease? I'd rather shovel shit than wade through HHS/NIH/CDC drek and personalities (and I shoveled lots of it when I was farming), but it does seem important to understand how the policies have evolved, and who really made the decisions that have caused so much unnecessary suffering.

 

[usedtobeperkytina]

I am familiar with that letter. It reflects Strauss's view and may or may not reflect Fukuda's view. I know of at least one person who helped in forming the Fukuda criteria does not agree and did not agree with that view.

No, I don't think NIH hates us. I think Strauss was embarrassed that his EBV theory didn't work out (as is reported in Osler's Web) so, like many doctors, he blamed the patients. I think for many years, his opinions had great influence over NIH. And some individuals still there may still have not changed. But I think the individuals on the Trans NIH ME/CFS Workgroup do have a good understanding of the disease and want to see progress made. One of them attended the IACFS/ME conference last year.

 

[Nielk]

The intention of the decision makers at HHS can only be measured by their actions. Actions speak louder than words.

NIH has put our disease at the bottom of the list of all diseases and has refused our pleas of the past thirty years.

CDC has refused to change their toolkit/ website information regarding the disease including the promotion of GET/CBT. Their program of education videos for clinicians is very poor and is based on the fatiguing condition. They refused to include the two day exercise test in their CDC multi site study.

The Secretary of HHS has been very consistent in refusing g every single one of CFSAC"s recommendations to HHS.

I am sure that there are HHS workers who get the reality of the disease and might want to help but, the decision makers don't.

In addition, they do not care what the community thinks. This is evident with their refusal to listen to the community of experts, advocates and patients who united in their urging HHS to stop the IOM and P2P processes.

Who at HHS championed for our case? Who cared to join our cause, listen to us and act for us? We were curtly dismissed!

Had HHS cared, they could have simply adopted the CCC. Had they thought that the CCC is too complicated, they could have convened a workshop of experts to somewhat simplify it. But, they didn't care about us.

All they care about is their complete control of this disease. This is because their control has distorted this historical disease as soon as CDC got their hands in it. They can't admit now that they have been wrong all this time and didn't act upon it.

All HHS cares about is HHS.

 

[Sasha]

Have we veered off-topic? We were intending to figure out what common goals we could agree on.

 

[alex3619]

(My apologies to the man named "Fukuda.")

I think Fukuda did the right thing, as the criteria were intended to be temporary and to be superseded by subgroups. Which never happened. Instead, and this is not his fault, we got everything lumped together without subgroups, and the criteria persisted way past their prime.

 

[alex3619]

I think Strauss was embarrassed that his EBV theory didn't work out (as is reported in Osler's Web) so, like many doctors, he blamed the patients.

A quick aside, the EBV theory is potentially back. It turns out that in MS most have a different strain of EBV than the general population. This might apply to us too.

 

[Ember]

The criteria were intended to be temporary and to be superseded by subgroups. Which never happened. Instead...we got everything lumped together without subgroups, and the criteria persisted way past their prime.

How did that happen?

 

[medfeb]

Have we veered off-topic? We were intending to figure out what common goals we could agree on.

The points that Neilk and Jimelis made in post 46-50 are important ones that speak to another goal for me - we need to fix the broken engagement model through which HHS interacts with this community.

The points about HHS ignoring input from the community are correct and I could add more - ignoring of CFSAC recommendations, recommendations on the medical education material on the CDC CFS website and toolkit, NIH refusing to increase funding or address some of the institutional barriers like the institute location in spite of repeated requests to do so, refusal to put a strategy in place, etc. The list is long.

Fixing this won't be easy and is probably going to require congressional oversight. But if we don't fix it, we will be left able to do little more than hope that HHS does what is needed. Neilk's and Jimelis points are that that hasn't worked so far. I'd like to see this issue acknowledged along with a goal to fix it

 

[Sasha]

That's a good point, @medfeb, that that should be a goal - I'm just wondering if it's relevant to the thread (it might be).

Are you happy that this is on-topic, @oceiv?

 

[medfeb]

If I may add a comment as food for thought… One thing where I think its relevant regarding IOM is that CDC has been tasked with developing clinical toolkit. Who will decide what goes in that? How will we get a chance to have input. possibly similar issues with in pushing a research agenda. But overall, I think we need a fundamental change in the overall policy - including engagement - and can use this opportunity to drive that

 

[Kati]

i agree that a common goal should be that HHS needs to make a valiant effort in fixing the stigma and neglect that has occured in the past 30 years. This means changing the disease out of Office of Women's Health into a well recognized inatitute, designated funding for biomedical research, appointing patient advocates in all decision process, and conducting public relation campaigns in breaking down enormous barrieres for patients and their families.

 

[Snowdrop]

recommendations on the medical education material on the CDC CFS website and toolkit, NIH refusing to increase funding

Maybe efforts can be focussed here then?

 

[snowathlete]

CFSAC has called for new RFAs and more funding commensurate with the disease burden for the past 10 years and has been refused by HHS.

Just this past June, 2014, CFSAC recommended an RFA and the reply from HHS was NO. .

Many of you are saying that now is an opportune time to ask congress to step in for us in order to put pressure on NIH for more funding because we have the media attention due to the IOM. Even though I do not agree with the IOM criteria and name, I agree that we are having a lot of media attention.

The question is can we take advantage of this media attention of the IOM report and try to promote funding? I, personally can get behind it if it is clear that the research is biomedical using the CCC. My problem is that if by doing so, we are promoting the IOM report, including the criteria and name, I cannot be part of it.

We can get behind this and for example quote Andrew Kogelnick saying " On a per patients basis, ME/CFS is dead last on the NIH roster". We can quote CFSAC recommendations for funding etc.. Do we need to quite the IOM report?

Although I understand your concerns, I just don't think quoting the CFSAC, ME/CFS experts, or anyone else, is going to have a significant impact. It never has before, even recently calls for change were rejected. Whether you agree with the IOM report/definiton/name or not, it has achieved something novel in that it has got a lot of attention, and that's because the IOM are respected and their opinion counts for something. Enough of a something? We'll have to see, gov't could still just ignore them if it wants to.

But I think it would be a huge mistake not to try and leverage the IOM report to get more funding for research. More funding means more studies and likely some or all will use CCC/ICC in isolation or in overlap with the IOM criteria. Even if some studies only used IOM criteria, more study increases the chance of finding a biomarker(s), which might well mean that the criteria issue becomes less important and/or clearer.

As Alex has been saying, we don't really have any direct say in what criteria get used in studies. I think some of the better researchers are aware of the issues though and are likely to take that into account. Personally, I don't see any reason why not to categorise the cohort by all three of CCC/ICC and IOM as the results might show some difference bettween the groups, potentially. And I'd have thought it would be fairly cheap to do this in some studies. But ultimately it's going to be up to researchers, and to some degree government if they provide grants.

For these reasons, I probably wouldn't mention the name or the criterias, because I don't think there would be much value to that, and campaigns work best when they are short and focused. But no matter where you stand on the IOM report/definiton/name, I don't see any other alternative ways forward that have a significant realistic chance of resulting in progress. So if I were running a campaign to get more research funding I would absolutely quote bits of the IOM report as reasons to increase funding.

Take these two example campaigns that both call for more research funding from gov't:
* We want more funding for research. Here's some reasons why. It should use the IOM defintion.
* We want more funding for research. Here's some reasons why. It should use the CCC definition.
I don't think either would be as sucessful as:
* We want more funding for research. Here's some reasons why.