Now that CFSAC's over, what should we do?

[Ember]

I can see us endlessly disagreeing over small details of nomenclature that people legitimately consider to have huge consequences for us all.

Here are two things that I think should concern us with the one-disease proposal. First, it broadens the case definition to include “chronic fatigue unspecified- fatigue without neuro-endocrine-immune symptoms and without PENE (PEM):”​

chronic fatigue unspecified- fatigue without neuro-endocrine-immune symptoms and without PENE (PEM)
atypical ME (or new name)- PENE (PEM) with continuous or fluctuating NEI symptoms and abnormal biological tests, but not all that meets ME-ICC (or CCC) or whatever new one is created.
ME level 1, 2, 3, 4 or 5 based on level of severity.​

Second, after removing ME, it renames CFS (or rather, chronic fatigue, unspecified) Atypical ME, even though Atypical ME requires PENE according to the ICC: “And if the person doesn't meet the new criteria completely, whatever it be, they can have 'atypical whatever.'”​

​

Thus ME risks becoming a wastebasket definition, enveloped in CFS and chronic fatigue, unspecified, both now renamed Atypical ME. And those patients with CFS but not PENE (or PEM) are said to be without neuro-endocrine-immune symptoms and are classified with chronic fatigue, unspecified.​

​

​

 

[usedtobeperkytina]

Not putting any more wood on the fire so it will go out.

Tina

 

[usedtobeperkytina]

I'm sorry we are again at an impasse, Ember.

The original question was about where do we go now after last CFSAC. PANDORA will continue to work on the ICD-10-CM issue as a member of the Coalition 4 ME/CFS. PANDORA will also follow up with the NIH and other government agencies on the issues mentioned in the written testimony.

PANDORA will work with the 14 organizations and other individuals who wrote the letter to CFSAC administrators on building more actions based on the four main requests in that letter. Look for announcements soon.

Tina

 

[Ember]

Not putting any more wood on the fire so it will go out.

For me, this wasn't a fire, Tina. I very much appreciated Mary's attempt to revise my wording. You then offered alternate wording yourself, and in a follow-up post, you made a counter-proposal. If my understanding of your proposal isn't accurate, please clarify.​

​

The process has been to object when you can't agree with something that's put forward, stating your reasons. If you can clarify your wording in a way that removes my reasons for concern, then I'll withdraw my objection. (Otherwise I'll prefer my own wording.) If we can't work toward understanding each other's concerns, there can be no consensus-building and we all lose.​

​

I hope you realize that all my effort here has been consistent with CFSAC's plan to follow up on case definitions, as well as with the first priority of the Joint Request for Action: “resolve the definition, name and classification confusion.”​

 

[rlc]

Hi bob, I understand, you have done a lot of work and you must be exhausted, I do feel though that although it has been difficult we have achieved a lot, we have created a list that although there is some disagreements, a lot is more a problem with wording, which I feel is based on some including myself not having a firm understanding of the complexities of the US medical system, but that these issues can be fixed. I have been looking into the US system and have more of an understanding of it.

So I would like to continue for a bit to just try and refine some points based on this understanding. I don’t think that a consensus can ever be reached on some points, the reality is that it is virtually impossible to get any random group of 20 or more people to come to a consensus on anything, and there is no chance of getting a consensus on a complicated and highly emotional issue like this.

but If the likes of Tina and medfeb want to keep reading, we may be able to come up with not a consensus document, but just some good well formed ideas that if they like any of them, they can take what they like to the CFSAC and it may help in getting some people some help to end their suffering.

So if Tina and medfeb want to keep reading, then this is what I will try to do, and if anyone else wants to join in then that’s great, but with the aim of not getting a consensus, but simply to come up with some well formed useful ideas that they can choose from. Different people think very differently and have different knowledge bases so people may come up with ideas that have not been thought of before that can help the situation. But I ask that people if they don’t like a suggestion that they just state their views so that whoever has written the suggestion can think about it and make a decision , and then leave it at that. So that people can concentrate on coming up with good ideas, and we don’t get distracted with endless arguments about things. The aim I feel should not be consensus just well formed ideas that Tina and medfeb can asses and see what is usable.

Have a good rest bob, if at any stage you want to jump back in you are more than welcome.

I have a lot to do tomorrow but will try and get back to this in the next 24 hour.

Thanks again for your efforts bob!!!!!!!!!!!!!!!!!!

All the best

 

[Ember]

And this would do away with the term "CFS." But it would leave chronic fatigue.

Bob, I'm sorry I am only halfway participating here. All my comments are for your consideration as including in your list. But I am not up to working out exact wording. Just giving points for y'all to include if you think it fits. I'll leave the wording to you guys.

Reviewing this earlier post, I think that I've given offence by misunderstanding Tina's proposal. If it means separating “chronic fatigue, unspecified-fatigue without neuro-endocrine-immune symptoms and without PENE (PEM)” from ME, then a separation of this sort doesn't seem inconsistent with the ICC:

chronic fatigue unspecified- fatigue without neuro-endocrine-immune symptoms and without PENE (PEM)

. . . . . . . . . . . . . .​

atypical ME (or new name)- PENE (PEM) with continuous or fluctuating NEI symptoms and abnormal biological tests, but not all that meets ME-ICC (or CCC) or whatever new one is created.​

ME level 1, 2, 3, 4 or 5 based on level of severity.​

​

As I see it, two problems remain. First, I think the CDC will need compelling evidence that patients without PENE (PEM) are, in fact, without neuro-endocrine-immune symptoms as well. They might be hard-pressed to decide now that those whose illness has been defined by Fukuda have symptomatic fatigue but no syndrome.

Second, it's difficult to imagine that the CDC case definition will be an ME definition. The figure above, reintegrated, looks to me more like the probable outcome, one that's more consistent with Reeves.

If my reading is correct, then Tina's proposal is consistent with what I'd contemplated, an ME definition. My wording separates ME from CFS, without getting rid of CFS however: “That, consistent with its statement that 'ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,' the CDC should recognize the ICC and its CCC predecessor as ME definitions, distinguishing ME (ICC, CCC) from CFS (Reeves, Fukuda)."

The failure to get rid of CFS may be an objection of Tina's to my wording. The failure to recognize CFS (ME removed) has been an objection of mine to hers. (Apologies, but I find these differences difficult to nail down without the wording.) I don't know whether this apparent impasse can be resolved. But we know that many share these concerns.

Mary expressed her concern when she attempted alternate wording:

Regarding the patients that are "left over" in the Fukuda patient population, I don't know what to call them since I don't know what kind of patients they are. But I think that if that group is given the "CFS" label by default, it will not help us and only continue the confusion we have today. Ideally, I think we want CFS to be retired, not casually assigned to a new patient population.

And Bob expressed counter concerns (though these weren't necessarily his own):

I expect these patients are particularly fearful about getting a scrapheap 'CF' diagnosis, where they are all accused of being malingerers and of having a psychiatric illness. And I have a lot of sympathy for them. If I was in that situation, I would be fearful about changes to clinical criteria.

And there's another sticking point with other patients who passionately do not want to see 'CFS' renamed as 'ME', or conflated with 'ME', because they do not want 'ME' turned into what 'CFS' is currently (i.e. a meaningless broad definition including psychiatric patients and chronic fatigue of unknown cause.)

 

[Ember]

If anyone can ultimately create a list, by whatever process, then I'd be really happy to see that.

Looking at my wording again from the perspective of Tina's objection, I realize that my wording is silent on whether CFS stays or goes. So I can't resolve any impasse on that level.

Getting rid of CFS doesn't seem practical to me though, considering that's how most of the research has been done. Initially any subset will be something of a research orphan. It's a transition.

 

[Ember]

(duplicate post deleted)

 

[PhoenixDown]

Reviewing this earlier post, I think that I've given offence by misunderstanding Tina's proposal. If it means separating “chronic fatigue, unspecified-fatigue without neuro-endocrine-immune symptoms and without PENE (PEM)” from ME, then a separation of this sort doesn't seem inconsistent with the ICC:..

One way or the other there's always going to be a "we don't know" diagnosis that has some stigma to it, it's inevitable, my argument (like many of us here) is that we should minimize that stigma by avoiding psychiatric diagnosis by default, and increasing awareness of existing research. I've also personally argued that labels like "ME" and "Fibromyalgia" are so tainted they should be dropped ASAP rather than spending the next 3 decades or so recovering and cleansing their reputations. Think how long it took for diseases like AIDS to get a good reputation, even decades after research had come through people held outdated views. Why repeat that, why not learn from history's mistakes?

 

[Ember]

The Coalition 4 ME/CFS's goal is to get "CFS" gone completely.

The criteria should change now according to the research. And then so should the name.

In the US, we want CFS absorbed into ME, so that we protect the good research and phase away the awful "CFS" label and diagnostic criteria, replacing it with ME or atypical ME, as the ME-ICC says for those with PENE. The others have chronic fatigue unspecified....

I really think the answer is to have one disease name, with a spectrum and levels of severity. This is the way it is with other diseases. And I think that is why the ME-ICC took this approach.

As you describe it, Tina, the position taken by the Coalition 4 ME/CFS differs from that taken by the ICC. Last November, you asked me to get clarification from Dr. Carruthers concerning the relationship between ME and CFS. I posted on this forum that Dr. Carruthers was happy for me to quote him as saying that ME is a form of CFS.

In his November presentation to patients, Dr. Carruthers characterized ME as a form or subset of CFS. He described ME as more specific and CFS as more general. He illustrated using the image of concentric circles, the smaller one being ME and the larger being CFS. And he used the analogies of a migraine being a form of headache and of mycoplasma pneumonia being a form of pneumonia. Now Dr. Carruthers' September presentation has been published in the Journal of IiME, urgently urging that we segregate the subset that we are calling ME more clearly, using the ICC. The presentation concludes with a reminder that the CCC demonstrably separates cases of those who have ME from those who have CFS.

The relationship between ME and CFS is discussed by both Dr. Carruthers and Dr. Broderick, who are authorized to write on behalf of the ICC panel of experts. Dr. Carruthers' article was published in early June, and Dr. Broderick's article was published online last December by the Journal of Internal Medicine. Drs. van der Meer and Lloyd have taken a different position.

Confusion concerning the ICC apparently raises patients' fears. One such fear is that the diagnosis of CFS is being obliterated, with the result that patients who don't meet the ME criteria will be characterized as having CF rather than CFS. The ICC doesn't obliterate the diagnosis of CFS, though you claim this to be the goal of the Coalition. Instead the ICC limits its scope to discussing ME criteria and their application, ME criteria being more resrictive than criteria for CFS.

Another fear is that CFS is being absorbed into ME, turning an ME diagnosis into a CFS diagnosis by means of a name substitution. The ICC doesn't propose absorbing CFS into ME or substituting one name for the other, though you claim this to be the wish of some in the U.S. Again, the ICC limits its scope to discussing ME criteria and their application, ME criteria being less inclusive than criteria for CFS.

Rather than trying to “get 'CFS' gone completely” by "replacing it with ME," shouldn't the Coalition be following the science as it unfolds? Dr. Broderick may be acknowledging that unfolding when he writes, “This is a refinement of the much more inclusive criteria of fatigue that goes by the label of CFS and may or may not include ME.”

CFSAC seems to acknowledge the unfolding science too in its November 2011 recommendation. Referring to CFS, ME and PVFS, the Committee writes:

We feel that the interests of patients, the scientific and medical communities, continuity and logic are best served by keeping CFS, (B)ME (Benign Myalgic Encephalomyelitis) and PVFS (Post Viral Fatigue Syndrome) in the same broad grouping category. Current scientific evidence would indicate there are more similarities between the three entities than there are differences. Whether they are synonyms for the same underlying concept, disease entities and sub‐entities, or merely the best coding guess is unclear. In reality, any or all of the above may be correct.

Again, shouldn't advocacy groups be urging CFSAC to follow the science on this issue? We patients deserve science.

 

[usedtobeperkytina]

Ember, I'm sorry I don't have the time to respond to this any more. I could go and collect contrary evidence and statements. I also can't reveal some conversations we have had with some of the ICC scientists. Marly Silverman was at the IACFS/ME Conference and gave a presentation on the Coalition's efforts. Many who were of one opinion have now changed or softened their stance. Again, part of this is the lack of understanding people in other countries, including scientists, have of the U.S. system and problems and effects the CDC creating CFS and associating criteria has caused and how best to undue the damage. When it is explained, in light of the way researchers are presenting their research, some changed their thinking. It is all evolution.

I am afraid we are just going to have to disagree for now. I must spend my time in more productive pursuits now. I'm sorry that I engaged you in the beginning of this thread and now leaving you hanging because I don't have time to do the research to continue the debate. It will all become clear soon.

 

[rlc]

Hi All, as I suggested to bob I feel that this list is still useful, but that the idea of making it a consensus document will never work as I think this tread has proved, the reality is that it is virtually impossible to get a group of 20 random people to agree with what is the best thing to have for breakfast, and there is no chance of getting a consensus agreement on very complicated and very emotional issues like CFS and ME.

So I propose that if people want we continue but with the idea of it being a list of suggestions that the likes of Tina and Medfeb can read and take to the US orgs to consider if they wish.

This means that there is no need for consensus, and there is no need for the wording to be completely accurate all that is needed is for what is being suggested to be written in a way that is understandable and the likes of Tina and Medfeb can ask for clarification if they don’t understand a proposal.

If someone thinks that they would like to add a new idea to the existing list, there is no need for consensus so no need for argument, if they just post their suggestion, and give people some time to raise any faults in the suggestion, so the person can consider these views, if they are happy with their original suggestion it can be added to the list, if they want to amend their suggestion they can do so and then it will be added to the list.

I have spent some time reading about the complexities in the US system, and have come up with another suggestion which I consider to be the most important of all, I have realized that the wording of suggestions 1, 2 and 3, doesn’t fit into the US system, so because these are largely my ideas I have taken the liberty of rewriting them for the US system. I will post my ideas in a separate post so that it is clear what I feel that the plan of attack should be.

Then repost the last update of the list with these included, then if any one has any new suggestions they can be briefly discussed, and then added to the list for Tina and Medfeb to consider.

So this will just be a list of useful suggestions, so there is no need to use up energy debating it, all existing suggestions on the current list will stay and any new ones will be added, and it won’t be a official document so there is no need to stress about exact wording, all that is need is for the meaning of the suggestion to be understandable to Tina and Medfeb.

Thanks to everyone who has contributed so far and a big thanks to bob for his hard work!

All the best

 

[rlc]

Hi Tina, RE

People in the UK want CFS separated from ME, because they believe the CFS label and made up criteria have corrupted the original disease. We agree.
I think we both want the same end goal of undoing the damage "CFS" and Fukuda has done to our disease in the areas of research, public perception and patients receiving accurate diagnosis and appropriate treatments. Because of the differing histories and current situation, not to mention different healthcare systems, we see two different ways to reach the goal. And, because U.S. CDC has an influence on the rest of the world, we must see them change, for the benefit of all patients all over the world.The question is of strategy of what to do at this point, given the current state, the mess, that the CDC created. In our view, with the lack of any research into ME in our country, which has spread to other researchers, the only hope now, from our perspective is to rename the existing CFS to either ME or something else and improve the criteria. Trying to black out all "CFS" stuff as not applying to the disease will set us back 20 years. We would have to convince the CDC and Congress to fund a whole new and much less prevalent disease.
We want the CDC-created, made up name and criteria to go away. Incline Village patients and Lyndonville patients had ME. But the CDC came up with a new name and a new criteria. That didn't change the illness. It was always ME. And, some of them got better. But as Bell has said in the last two years and as he just published in a paper that came out today, some of his former patients may not now meet the criteria, but they did not recover to full function. In other words, they are still sick.
I really think the answer is to have one disease name, with a spectrum and levels of severity. This is the way it is with other diseases. And I think that is why the ME-ICC took this approach. I notice the primer also often gives special recommendations for those "severely ill." There is a precedence. We spoke about MS before. There is a term called "atypical MS." This is someone who shows signs of MS, but doesn't meet the diagnostic criteria. Maybe their MRIs don't show the lesions at the time of the test, but they have the eye problems, headaches and motor control problems. They may later develop more symptoms and a later test may show the MRI problems.

I agree with what you are saying, and I doubt that anyone else involved in this tread would disagree with you, so it’s about the how, not the what.

However I think that many people get lost in all the side issues that are caused by the main problem, and that this causes energy to be wasted and the chances of any meaningful success are lost.

People believe that the problem is not having ME recognized as an official physical diseases, or that it is that CFS is seen as psychiatric, or that ME is not seen as a Different disease to CFS, or the problem is that a certain definitions isn’t right, or a different one should be used, they believe the problem is PEM not being recognized as a cardinal symptom, they believe that the attitude of the insurance companies is the problem, they believe that what is on the CDC website is the problem, they believe that a lack of biomedical research is the problem, they believe that a lack of funding is the problem, they believe that a lack of research into biomarkers is the problem, they believe that it is the lack of things like SPECT scans being investigated as diagnostic tool for ME are the problem, etc, etc, etc all these things or combination of these things people think is the problem.

None of these things are the problem!!!! There is and always has been only one problem in the US the CDC, all these other problems stem from the CDC, they invented this mess, and they are keeping it going because they have backed themselves into a corner which they can’t get out of without admitting that they have denied the existence of a devastating disease that has a long history of causing epidemics in the USA, and have failed to notify the US government and the public about this problem, that they have created a none existent disease (CFS) to effectivly cover it up, and they have implied that this disease is a psychiatric illnesses, that they have made definitions for their new disease with symptoms so broad that they could be caused by hundreds of known diseases, and have included testing requirements to rule out these other diseases that can cause these symptoms that are so woefully incomplete that it has caused an misdiagnosis problem of epic proportions, that they have wasted many millions of tax payer dollars on so called research that isn’t even aimed at addressing the problem, and that completely fail’s to follow correct processes for ruling out other diseases that cause these symptoms which guarantees meaningless results, that they have wasted many millions of dollars on advertising there new disease CFS instead of looking for the causes of ME, etc, etc they cannot admit that this is what has been going on since 1985 and that they have taken hundreds of millions of dollars off the US government to do this, without getting in an epic amount of trouble.

The CDC cannot and will not admit what has been happening and never will.

So when you say

We would have to convince the CDC and Congress to fund a whole new and much less prevalent disease.

This is never going to happen while the CDC is involved!!! the CDC won’t let it happen because they can’t without it being found out what they have been up to since 1985, and at the moment they have all the power, I believe there is a US expression for this kind of thing “Farting against thunder”. If the CDC wasn’t in the way then if enough evidence was produced backed by showing that the patients and friends and families represents a voting group of about 20 million people there is a chance of getting Congress to agree.

So the aim has to be to take the power away from the CDC or there is no chance whatsoever of anything useful being achieved ever!!!!

I propose that as the CFSAC mandate says that its role is to make recommendations to the Secretary of Health and Human Services Kathleen Sebelius who is a senior democrat politician, who has no ties to the CDC! And because the CDC has no rights to veto this process!

That the most important recommendation that can ever be made is

That it is recommended to the Secretary of the HHS, that all funding to and everything that the CDC has to do with CFS is stopped, and that the CDC CFS department is closed permanently, and that another CFS department is opened in another HHS agency, from my understanding this would most likely be the NIH because it is the primary agency of the United States government responsible for biomedical and health-related research. And has a massive budget!!

This proposal should be backed up by gathering together the information on all past and present CDC failures and sins in relation to ME and CFS along the lines of the ones I mentioned towards the end of post #217 here http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-11 ( paragraphs 59 to 70) I have collected a large amount of this kind of evidence over the years and would be more than willing to help with this!

So this proposal will be backed with a file showing the evidence of what the CDC has done wrong, and it will be explained that it is because of this constant history of failures since 1985 that we want its CFS department closed and a new one opened in a different agency,

This proposal should also be backed up by an overwhelming vote of no confidence in the CDC by the patient community in the US, and all medical people opposed to the CDC continuing to be in control of CFS. The petition can be organized using the internet to collect signatures from US patients backing this proposal, and CFS and ME doctors and researchers from around the world can write written submissions. This can also be backed up by the likes of press releases that state what the goals are and why it should be done.

If this is achieved the NIH or whoever are chosen can then be tasked with doing the important things like creating a complete differential and testing guide and doing the replication study. Because unlike the CDC they have nothing to hide they will be able to do these things in a sensible scientific and medical manner and all problems can be solved.

If it is looked at realistically asking for this is not a big ask. All we will be doing is asking the Federal US government which is budgeted to spend 3,795.6 billion dollars in 2112, to move 6 million dollars from one agency to another! If it is pointed out that 4million patients plus 10-20 million friends and relatives will be being encouraged to vote for whichever party that does this, then they would be insane not to, it would be the cheapest vote bye in history! Because it won’t cost anything! The secretary of the HHS Kathleen Sebelius is a very senior democrat politician, who came close to being Obama’s Vice President, Obama will hear about this in no time! Kathleen Sebelius also has a history of standing up to insurance companies and refusing campaign donations from them more info on her here http://en.wikipedia.org/wiki/Kathleen_Sebelius

The CDC is the only problem in the US all other problems stem from it, they will never ever change because they have too much to lose and nothing is ever going to be achieved while they are involved. So the number one priority has to be to get everything transferred to another HHS agency.

I will write up this proposal, and have spent some time getting to know the US system and will rewrite my other proposals that will go along with this one based on my new understanding of the US system in a separate post.

Because the CDC while it has the power will never let the truth out!!! I would like to point out some strong concerns and reservations on one of the US approaches being proposed. Which is

In the US, we want CFS absorbed into ME,

While the CDC is in charge of CFS in the US, this plan will need the CDC to act in good faith and honestly and respect any scientific research into ME, and admit that all of the research it has done since 1985 is completely wrong, as I have just explained because the CDC has so much to lose by admitting what it has been up to since 1985 there is no way that they will ever do this! CDC CFS is massive it is backed by the power of the CDC and massive amounts of bogus science that backs the CDCs view of CFS, ME is by comparison tiny it has no government organization backing it in the US and the scientific research that backs it up is tiny and virtually all is un replicated see Corts new article http://forums.phoenixrising.me/index.php?threads/once-is-not-enough-by-simon-mcgrath.18191/

So to use an analogy, CDC CFS is massive and all powerful like the Sun, ME in comparison is tiny and insignificant like the moon, I see no way that the sun can be absorbed into the moon without being at least irreparably burned, but most likely disappear into the flames forever.

The CDC will do everything in its power to stop CFS being absorbed into ME, because if this US plan came to fruition it will mean that everything the CDC has done since 1985 will be exposed. The most they could ever possibly allow is that the name is changed to ME, but ME will be CDC CFS with a different name, so nothing will be achieved.

The CDC is the cause of all the problems, which is why I propose that we demand that they no longer have anything to do with it and another HHS agency who has nothing to hide takes over everything to do with CFS and ME. Once the CDC is out of the way positive change can be made very quickly!

All the best

 

[rlc]

Hi All, this is my list of what I think the recommendations to the CFSAC should be, it is written based on the fact that the replicated science needed for this illness has never been done for this illness see Cort post here http://forums.phoenixrising.me/index.php?threads/once-is-not-enough-by-simon-mcgrath.18191/ . Therefore it is unscientific to say that anything about this condition is a proven scientific fact. Because of this it only asks for the correct scientific protocol to be followed for the first time with this illness, and a replicated study to be done, from these proven scientific facts it will then be able to say what this disease is and a definition/definitions can then be created based on replicated science. This approach as well as being the scientific one, avoids all the issues that have constantly divided the patient community such as what definitions should be used, what the symptoms are, what the name should be etc, because the science has never been done properly nobody knows the answers to these questions, so all of these issues will be deferred and left to the scientists to work out.

I ‘m adding a new suggestion which I believe is the most important thing that can possibly be done to get the ball rolling in the right direction for once. Some of my previous suggestions have been removed because this new suggestion makes them redundant.

First I will put the description I gave to Tina to help make it clearer what I mean by this first new proposal (see post #453 http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-23 to her for a more detailed explanation from paragraphs 5 to 24) and then a briefer version of it. Plus the new updated version of my older proposals.

“I propose that as the CFSAC mandate says that its role is to make recommendations to the Secretary of Health and Human Services Kathleen Sebelius who is a senior democrat politician, who has no ties to the CDC! And because the CDC has no rights to veto this process!

That the most important recommendation that can ever be made is

That it is recommended to the Secretary of the HHS, that all funding to and everything that the CDC has to do with CFS is stopped, and that the CDC CFS department is closed permanently, and that another CFS department is opened in another HHS agency, from my understanding this would most likely be the NIH because it is the primary agency of the United States government responsible for biomedical and health-related research. And has a massive budget!!

This proposal should be backed up by gathering together the information on all past and present CDC failures and sins in relation to ME and CFS along the lines of the ones I mentioned towards the end of post #217 here http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-11 ( paragraphs 59 to 71)I have collected a large amount of this kind of evidence over the years and would be more than willing to help with this!

So this proposal will be backed with a file showing the evidence of what the CDC has done wrong, and it will be explained that it is because of this constant history of failures since 1985 that we want its CFS department closed and a new one opened in a different agency,

This proposal should also be backed up by an overwhelming vote of no confidence in the CDC by the patient community in the US, and all medical people opposed to the CDC continuing to be in control of CFS. A petition can be organized using the internet to collect signatures from US patients backing this proposal, and CFS and ME doctors and researchers from around the world can submit written submissions. This can also be backed up by the likes of press releases that state what the goals are and why it should be done.

If this is achieved the NIH or whoever are chosen can then be tasked with doing the important things like creating a complete differential and testing guide and doing the replication study. Because unlike the CDC they have nothing to hide they will be able to do these things in a sensible scientific and medical manner and all problems can be solved.

If it is looked at realistically, asking for this is not a big ask. All we will be doing is asking the Federal US government which is budgeted to spend 3,795.6 billion dollars in 2112, to move 6 million dollars from one agency to another! If it is pointed out that 4million patients plus 10-20 million friends and relatives will be being encouraged to vote for whichever party that does this, then they would be insane not to, it would be the cheapest vote bye in history! Because it won’t cost anything! The secretary of the HHS Kathleen Sebelius is a very senior democrat politician, who came close to being Obama’s Vice President, Obama will hear about this in no time! Kathleen Sebelius also has a history of standing up to insurance companies and refusing campaign donations from them more info on her here http://en.wikipedia.org/wiki/Kathleen_Sebelius

The CDC is the only problem in the US all other problems stem from it, they will never ever change because they have too much to lose and nothing is ever going to be achieved while they are involved. So the number one priority has to be to get everything transferred to another HHS agency.”

My new proposals are limited to only 3, these I believe will if accepted solve every single problem in the shortest possible time and because it is only three proposals it is simple and no effort or money will be used for anything else, CFS currently only has six million dollars a year allocated to it by the government, we need every cent to be used for the projects that will solve the problem for ever. I’m proposing that as well as the CDC CFS department being closed that all its research projects are stopped and the money transferred to the new CFS department at a new agency. This is because we know that the CDC is not aiming to solve the problem and whatever it is doing now will be as useless as everything it has done in the past, so there is no point in it being done, instead all money will be transferred to doing things like replicated science study.

This is the more concise updated list of my proposals. It’s not meant to be perfectly worded just to describe in an understandable way what I am proposing.

1a The CFSAC will be asked to recommend to the secretary of the HHS that the CDC CFS department is closed permanently, and its CFS website taken down, and all research that it is presently conducting to be stopped, and that the HHS will set up a new CFS department in another one of its agencies (such as the NIH) and that all government funding that the CDC has been receiving will be transferred to this new CFS department. If more funding is needed to achieve articles 2 and 3 of these recommendations the HHS will insure that they are provided. The HHS will supervise the creation of this new CFS department and insure that highly trained staff are selected for it and that it conducts itself in a highly scientific manner and is dedicated to finding the answers to the scientific nature of this condition and finding treatments to end the suffers pain

1b This new CFS department will be instructed that as correct scientific procedure has never been followed in the history of this illness and replication studies have not been done to ascertain the true cause, CFS will be viewed until such time as the science has been done, as a disease of unknown cause, and it will be assumed that it is a physical illness until such time as this science has been done, (due to the detrimental effect on the patients of the previous assumed psychiatric nature of this illness) The new website created by the agency that has been assigned CFS will not contain any information that states or implies that CFS is a psychiatric illness, and will not recommend psychiatric treatments such as GET and CBT due to evidence that they may have a detrimental effect on some patients physical health.

(The new agency that sets up the new CFS department will be instructed that its number one priorities are to fix the massive problems of not having a complete differential and testing guide to rule out all other diseases that can cause the symptoms attributed to ME/CFS, and to immediately start fixing a almost complete lack of replicated science in this field. They will be instructed to do these things)

2a. An independent panel of Diagnostic experts will be created to write a complete differential diagnosis list and testing guide to rule out all other diseases that can cause the symptoms attributed to ME/CFS. They will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this. For difficult to diagnoses diseases, and where newer information for diagnosing certain diseases has been found that doctors may not be aware of. This guide will provide instructions on this and/or references to the relevant information Clinicians and researchers who have already created differential diagnoses lists that are more comprehensive then the CDCs list, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the CCC, and the writers of the IACFS/ME toolkit etc.

2b When this new differential and testing guide is created it will be placed prominently on the new website created by the agency that has been entrusted with the new CFS department. Where it will be freely available to the medical community and patients.

2cThe HHS will inform the medical community and insurance companies of the existence of this new Differential and testing guide and recommend that it is used to rule out all other known disease that can cause the symptoms attributed to ME/CFS in all patients suspected of having ME/CFS. And all already diagnosed ME/CFS patients who have not had the testing recommended in the newly created guide.

3a. A new definition/definitions will be created, that will be based on independently replicated science. This replicated science will be based on the patients having had all the testing to rule out all other diseases that cause the symptoms attributed to ME/CFS, using the differential diagnosis and testing guide that will have been created when article 2a has been accomplished.

(This is to insure that people with other undiagnosed known illnesses are not included in the research, because it will have a detrimental effect on the results of the replication study)

A review of the medical literature will be done, to compile a list of the physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for the physical anomalies that are found in the review of the medical literature will be performed in a replicated manner on all the patients in all the groups selected for this replication study.

3b From this scientific information a new definition/definitions will be written. And new name/names for the illness/illnesses will then be created based on the scientific findings. CFS will not be used as the name for any of the illness/illnesses that have been defined.

(Due to the strong dislike amongst the patient community for this name, its failure to accurately define the symptoms the patient’s experience and its long history of being portrayed as a psychiatric illness)

3c. The Patient Community will be regularly updated on the progress of this project and the details of it, this information will be made available to the patient community via the new website that is created by the new CFS department

3d. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

If this proposal is submitted in will need to be backed up by supporting information and actions. We have to have this to back up these request, we cannot ask for significant changes to the US government’s medical system without the evidence to prove the need for this.

Articles 1 will have to be supported by a file that lists the pasts and present sins and failures of the CDC along the lines I have out lined in this post http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-11 ( paragraphs 59 to 71) (I have large amounts of this kind of information and I’m more than willing to help with this)

Article 1 should also be supported by the results of an internet petition, which will have the signatures of US patients who support a vote by the patient community that expresses a vote of no confidence in the CDC CFS department and the desire to move this department and all it’s funding to a different HHS agency. Written submissions backing this proposal should be obtained by ME and CFS clinicians and researchers.

Article 2 should be supported by a file containing other articles and publications that show that the CDC list to rule out other diseases is very inadequate. And a new differential and testing guide to rule out the other diseases that can cause the symptoms of CFS and ME is urgently needed. The articles that should be printed out and included in this file are. The current CDC list http://www.cdc.gov/cfs/diagnosis/testing.html

This article by Dr Shirwan A Mirza that explain the very common diseases that will be missed by following the CDC guidelines http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome This article by Dr Mirza that explains other admissions in the CDC guidelines as well as the failures of the NICE guidelines for testing http://www.bmj.com/rapid-response/2011/11/01/chronic-fatigue-syndrome-nice-and-cdc-miss-boat

From the article the complexities of diagnosis by DrByron Hyde http://www.wicfs-me.org/Pdf%20Files/Byron%20Hyde%20-%20Complexities%20of%20Diagnosis.pdf print out everything from page ten starting from section ordering tests and finishing before the section, Two cautions on page 12. Then starting from Doppler Ultrasound and Echocardiograms section on page 13 print everything starting from there until the section Fundamental Advice on page 18.

From the IACFS/ME toolkit http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf print everything starting from exclusionary illnesses on page 14 until the section 4.5 distinguishing ME/CFS from depressive and anxiety disorders.

From the CCC http://www.co-cure.org/ccpccd.pdf print out everything between Exclusions on page 12 and idiopathic chronic fatigue on page 13. And everything between Laboratory and investigative protocol on page 24 to making a positive diagnosis on page 26

This differential list on the best practice site can be included http://bestpractice.bmj.com/best-practice/monograph/571/diagnosis/differential-diagnosis.html

Anyone who reads these articles will soon see that everyone of them are recommending very different testing and that none of these lists are complete, and the CDC ones is the worst by far!

Dr Hyde has also written an entire book about finding the misdiagnosed in the CFS group, called missed diagnoses which is available here http://www.lulu.com/shop/byron-hyde-md/missed-diagnoses-myalgic-encephalomyelitis-chronic-fatigue-syndrome-second-edition/paperback/product-18463888.html A copy of this could be included to show that the CDC list is so bad that someone has had to write and entire book about it

Article 3 should be supported by a file containing this Dr Antony Komaroff publication https://www.thieme-connect.com/DOI/DOI?10.1055/s-0031-1287654 which explains the almost total lack of replicated science in this field Corts article here http://forums.phoenixrising.me/index.php?threads/once-is-not-enough-by-simon-mcgrath.18191/ could be included as well as a briefer explanation of this problem, and the urgent need for a replication study along the lines that I have out lined.

Information on the economic costs to the US economy of so many people being sick for such long periods of time should also be included, so that the US government is made aware that there will be considerable financial benefit to them, if they put in the time and resources to permanently fix this problem

This proposal and supporting evidence should also be backed up by the US orgs letting the relevant politicians know that they represent an estimated 4 million patients plus their friends and relatives (say 10-20 million people) and that they will be recommending that the people they represent consider voting for whichever party accepts this proposal. (Like I say the Secretary of the HHS Kathleen Sebelius is a senior democrat politician and word of this will very quickly get back to Obama) The press should be informed of this proposal and all the reasons for it and that the US orgs represent a very sizable segment of the US population, this will increase pressure on politicians to accept the proposal. And an internet campaign through the various forms of social media and ME, CFS web sites should be done to gain support for this proposal and to make as many people aware of it as possible.

I recommend that if the meeting that has been requested by the US orgs with the Secretary of the HHS Kathleen Sebelius is accepted that this proposal is given directly to her!!!! See http://phoenixrising.me/joint-request-from-the-mecfs-community-for-action

All the best

 

[rlc]

Hi All due to it proving impossible to reach a consensus on suggestions, I’m continuing this list with the intention of it only being a list of suggestions that the US orgs can consider if they want. If anyone would like to contribute please read this post 452 http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-23 first

List of ideas for the US ME/CFS orgs.

1a. The CFSAC will be asked to recommend to the secretary of the HHS that the CDC CFS department is closed permanently, and its CFS website taken down, and all research that it is presently conducting to be stopped, and that the HHS will set up a new CFS department in another one of its agencies (such as the NIH) and that all government funding that the CDC has been receiving will be transferred to this new CFS department. If more funding is needed to achieve articles 2 and 3 of these recommendations the HHS will insure that they are provided. The HHS will supervise the creation of this new CFS department and insure that highly trained staff are selected for it and that it conducts itself in a highly scientific manner and is dedicated to finding the answers to the scientific nature of this condition and finding treatments to end the suffers pain

1b. This new CFS department will be instructed that as correct scientific procedure has never been followed in the history of this illness and replication studies have not been done to ascertain the true cause, CFS will be viewed until such time as the science has been done, as a disease of unknown cause, and it will be assumed that it is a physical illness until such time as this science has been done, (due to the detrimental effect on the patients of the previous assumed psychiatric nature of this illness) The new website created by the agency that has been assigned CFS will not contain any information that states or implies that CFS is a psychiatric illness, and will not recommend psychiatric treatments such as GET and CBT due to evidence that they may have a detrimental effect on some patients physical health.

(The new agency that sets up the new CFS department will be instructed that its number one priorities are to fix the massive problems of not having a complete differential and testing guide to rule out all other diseases that can cause the symptoms attributed to ME/CFS, and to immediately start fixing a almost complete lack of replicated science in this field. They will be instructed to do these things)

2a. An independent panel of Diagnostic experts will be created to write a complete differential diagnosis list and testing guide to rule out all other diseases that can cause the symptoms attributed to ME/CFS. They will write a step by step easy to follow guide on how to rule out all the other diseases and all the tests that are needed to do this. For difficult to diagnoses diseases, and where newer information for diagnosing certain diseases has been discovered that doctors may not be aware of. This guide will provide instructions on this and/or references to the relevant information Clinicians and researchers who have already created differential diagnoses lists that are more comprehensive then the CDCs list, or have a track record in finding the misdiagnosed patients in the CFS group, will be consulted or included in the panel. Such as Dr Byron Hyde, Dr Shirwan A Mirza, the writers of the CCC, and the writers of the IACFS/ME toolkit etc.

2b. When this new differential and testing guide is created it will be placed prominently on the new website created by the agency that has been entrusted with the new CFS department. Where it will be freely available to the medical community and patients.

2c.The HHS will inform the medical community and insurance companies of the existence of this new Differential and testing guide and recommend that it is used to rule out all other known disease that can cause the symptoms attributed to ME/CFS in all patients suspected of having ME/CFS. And all already diagnosed ME/CFS patients who have not had the testing recommended in the newly created guide.

3a. A new definition/definitions will be created, that will be based on independently replicated science. This replicated science will be based on the patients having had all the testing to rule out all other diseases that cause the symptoms attributed to ME/CFS, using the differential diagnosis and testing guide that will have been created when article 2a has been accomplished.

(This is to insure that people with other undiagnosed known illnesses are not included in the research, because it will have a detrimental effect on the results of the replication study)


A review of the medical literature will be done, to compile a list of the physical anomalies that have been found in CFS and ME patients, such as SPECT, PET, MRI scans, NK cells, RNase L, VO2 max, POTs, NMH etc, etc. Tests for the physical anomalies that are found in the review of the medical literature will be performed in a replicated manner on all the patients in all the groups selected for this replication study.

3b From this scientific information a new definition/definitions will be written. And new name/names for the illness/illnesses will then be created based on the scientific findings. CFS will not be used as the name for any of the illness/illnesses that have been defined.

(Due to the strong dislike amongst the patient community for this name, its failure to accurately define the symptoms the patient’s experience and its long history of being portrayed as a psychiatric illness)

3c. The Patient Community will be regularly updated on the progress of this project and the details of it, this information will be made available to the patient community via the new website that is created by the new CFS department

3d. Adequate Funding will then be provided to further research patients that fit the definition/definitions created by this process to find diagnostic tests, causes and treatments.

More information that explains the need for article 1, and supporting information and actions to achieve steps 1, 2, and 3 can be found in post. #454 http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-23

More information that explains the details of and the need for article 2 can be found in post #421 here http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-22 And post #168 http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-9

Detailed information on the need for replicated science can be found in Corts article here http://forums.phoenixrising.me/index.php?threads/once-is-not-enough-by-simon-mcgrath.18191/

A more detailed explanation of the replication study proposed in 3 can be found in Post #331 http://forums.phoenixrising.me/index.php?threads/now-that-cfsacs-over-what-should-we-do.17972/page-17

I would also like to suggest that if the proposal to meet with the Secretary of the HHS Kathleen Sebelius is accepted that this plan is given directly to her as well as going through the CFSAC see http://forums.phoenixrising.me/index.php?threads/me-cfs-orgs-push-secretary-of-health-sibelius-for-strategy-meeting.18237/

Other suggestions made are

Alternatives 4:

4i. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC will recognize the ME-ICC and its predecessor, the Canadian Consensus Criteria, as case definitions for ME, distinguishing ME (ICC, CCC) from CFS (Reeves, Fukuda).
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.

4iii. That, consistent with its statement that “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS,” the CDC should recognize the ME-ICC, as the case definition for ME, until such time as (articles 2a and 2b have been completed and) a new definition has been written based on replicated science. Until then ME-ICC will be used to distinguish ME from CFS (Reeves, Fukuda).
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


5. More research funding for the biomedical model of illness, using CCC and ICC alongside Fukuda for all research, until such time as the new definition based on replicated science is completed.
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


Alternatives 5:

5i. More research funding for the biomedical model of illness, using CCC and ICC for all research, until such time as a new definition based on replicated science is created.
Research on the ME/CFS population should not be carried out with the assumption that the cohort represents a homogeneous population.


6. Promotion of CBT and GET as therapies for CFS patients will be removed from CDC literature, toolkit and website.
(can we be specific about what we want removed?)


Alternatives 6:


6ii. The CDC to remove all reference to CBT and GET from it's website, and clinicians warned that these therapies do not help the majority of CFS/ME patients, and a high proportion of patients anecdotally report being harmed.
The PACE Trial* demonstrated that CBT is ineffective at reducing phsycial disability in secondary care patients.
The PACE Trial demonstrated that only approximately 13% of secondary care patients respond to CBT or GET, but the trial excluded severely affected patients.
The FINE Trial* demonstrated that severely affected patients do not respond to therapies based on CBT that include components of GET.
In UK patient organisation surveys*, a high proportion of respondent reported being harmed by both CBT and GET,


7. The CDC will remove all information from their website based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.
(should we be more specific about this and provide specific information about what we want removing, or at least examples?)

Alternatives 7:

7i. "The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS."


7ii. The CDC will conduct a systematic review of all its past research, and removed from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, any information and research that is based on on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS. Any unretracted or unremoved research, which is based on the previously described criteria, must be clearly marked as outdated.

7iii. The CDC will remove all information from the CDC's CFS website, CDC's CFS literature, & CFS toolkit, that is based on CF/idiopathic fatigue (Oxford and 'Empirical' studies) or meta-analyses and review articles conflating CF/idiopathic fatigue with ME/CFS.


8. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), and the requests we outline, the CFSAC should re-issue.


Alternatives 8:

8i. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.

8ii. The CFSAC should review all their previous recommendations for clarity, utility, redundancy, and applicability. Based on this review, and a review of responses received from the Assistant Secretary and Secretary (if any), and the requests we outline, the CFSAC should re-issue recommendations that address current priorities in ME/CFS policy in a clear and concise manner.



9. The CDC will produce a state-of-knowledge article, updated annually, in relation to ME/CFS, so that the older research and current views can be put in perspective. This will be an annual review article to be published.



10. The CFSAC should aim to educate physicians, schools, social services, and the public through any means possible to it, including making recommendations.
(The reference to eduction has been placed back on the list, but with different wording - whoever first opposed the original item re eduction, please can you repost you objection if still appropriate.)


11. CDC should cease use of the surveys developed and presented in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005.
(Again, this has been reposted but with different wording. If the original objections still apply, then please repost them.)


Alternative 11:

11i. CDC should cease diagnostic use of the surveys in its "clinically empirical approach to the definition and study" of the disease, Reeves et al. 2005,

 

[justinreilly]

Still thinking about what that committee can actually do...

Could it recommend that the CDC (would that be the correct organisation?) issue a public apology for the govt's mistreatment of ME patients all these years, a la Norwegian govt, and issue a press release to the effect that it has done that, and why? I.e. bypass these people it's advising and go straight to the press?

I totally agree. Yes, CFSAC has no formal authority to direct anyone to actually do anything. That shouldnt stop them, though from using their recommendations much more effectively. Such as 'calling out' the CDC "CFS" operations as a criminal enterprise, etc and issuing a press release, having a press conference, etc. I don't think they've even suggested that NIH funding be increased (and if they have it was only recently).

They could change the name of CFSAC to MEAC (if they have the power to do so).

They should also actively lobby for a meeting with the HHS Secretary.

At the very very least they should all use the term "ME" and not "CFS", much less "CF" or "F"! This is so basic that it sickens me. They should institute the system that was done at a conference where every time someone said "CF" they had to donate a dollar to ME research.

Why waste everyones time if they're not going to take appropriate "action" such as that you suggested?

 

[justinreilly]

That's the fundamental problem, imo. The fact is, the government doesn't take them seriously. No one there was in a position to make any decisions or commitments. It's all fluff. The CDC guy has a message to take back to the CDC, but I doubt it's news to them that patients don't like the Toolkit. The fact that the CFSAC recommends they take it down means nothing. There's no teeth there, no authority. The CDC will do whatever it bloody well pleases with little, if any, regard for what the CFSAC suggests politely that they do.

The best that the people on the CFSAC can do is inform their higher-ups what the state of ME/CFS is in the medical/government world. If they're sufficiently dedicated and concerned, the individuals may be able to influence their superiors. There was a huge lack of awareness of fundamental issues with ME/CFS -- like the fact that there are only a couple dozen doctors in the whole country that even have a clue about how to treat ME/CFS, much less enough to create this buy-in they're so fond of.

It seems to me that the best the committee could do for us is to bring the message to their home offices of the truly pathetic state of ME/CFS medicine. After the patient testimonies, they seemed genuinely sympathetic of the hardship this illness can cause, but they still seemed to think that ME/CFS can be managed by a Primary Care Physician. Hello?

We have next to no doctors. We have essentially no research funds. We have no adequate case definition. We have no standard treatment plan. We have trouble getting disability. We can't routinely get the medications that can improve quality of life. We can't get insurance to pay for a lot of the treatments that can help because of {see above}. And so on....

I think the committee finally gets that we are really very ill. I don't think they get that we are really very ill in a vacuum of basic medical services.

Before the committee can do anything substantial for us, all the committee members need to be taught what exactly is the state of medicine with regard to ME/CFS. If we can do that, the committee might be able to help us some time in the future.

Rant over.

I fully agree. I think it would be very helpful to have more patients on the committee who can bring in-depth knowledge and wake-up calls to the Committee and guide them to focus on appropriate issues, as I think Prof. Jason does. I would appreciate someone more forceful than him in really pushing them to take appropriate steps.

I would like to see a bunch of us get together and nominate one person to get on the Committee. It would be a lot of work for that person. But I think just showing up with no more knowledge than we currently possess, that person would be much more informed and effective than the majority of current members.

The rest of the group, and as many as possible we could recruit, would help and support this person so they are not too taxed by the responsibilities. Is there anyone else, besides me, that would like to commit to such a project?

 

[justinreilly]

I care very deeply about this committee and how if (dys)functions. I am planning some in-depth posts about various related issues. A couple points, for now:


I posted last week about how the committee is structured and what it does: http://www.occupycfs.com/?p=257


We've been trying to do this to some extent. This round, many of us repeated the main message of the joint letter of concern. It's a challenge because we don't find out until a couple days before the meeting who will be giving comment. And written comments are due BEFORE people know they were going to speak. In terms of how people are selected, that process is a complete mystery.


Voting members are appointed for four years, and they try to have terms overlap so there is not huge turnover at one time. Four new members (out of 11) joined this time. Turnover of the ex officios from the agencies is up to those agencies. In terms of briefing new members, I think this is critical. I was tremendously disappointed at the lack of knowledge displayed by some of the voting members - although I don't fault them for asking questions. It seems like it's the committee's job to ensure that new members are adequately briefed. I don't know if there are any federal regulations about the public discussing CFSAC business with individual members.


As far as I know, they cannot. Or at least, they have not done so in the past.

Interesting post.

The fact that only four spots are reserved for stakeholders (including insurers) who are not either government officials or research scientists seems very clearly to me to be an attempt to reduce practical viewpoints from the committee, especially from clinicians and patients. Research scientists are easily influenced to avoid controversy and practical concerns.

Jennie, I must ask again that you use some other nomenclature than "CFS." I suggest ME. Every time a respected advocate such as yourself says "CFS" it furthers that meme which does us so much harm. There will never be changes we need if we don't first implement them ourselves.

 

[justinreilly]

Autism:
http://iacc.hhs.gov/about/

Several things jump out:

- The rank of the member from govt. is very high including Collins himself
- Sebellius appoints
- Non-profits and others are on committee
- They met 10 times last year, some were committee meetings and sometimes by phone
- Established by law

Good points. Didn't know this. Most of the government reps are NIH Institute Directors (plus the NIH Director, as you noted).

 

[justinreilly]

I may not understand things correctly but if they did that... wouldnt it destroy the relationship this commitee has with gov orgs etc? They are like a big link between us and the gov... maybe if they did that it would put an end to all by going to the press about the gov orgs not listening at all. Once again a case of us and them.. and not working together to solve issues.

I do thou completely agree that press releases thou could be good if they could do them on some things.. I wish more media would get interested in these meetings and report it.

None of the Govt orgs are really listening to CFSAC, much less working with them, so nothing would be lost. A lot could be gained. Media won't be interested unless something interesting happens such as the Committee "rebeling" and shaming the agencies esp CDC.