How the government bought off the advocacy movement

[RustyJ]

If that's your point, then I stand corrected. But are you claiming that the CDC is aware that ME/CFS is a physical (neurological or immunological) illness, but try to hide this fact, or try to force patients back to work nevertheless? Or are you saying that they simply believe that ME/CFS is psychosomatic? If there is in fact evidence that they are withholding information, then that is a grave matter. But if they are simply acting on the belief that ME/CFS is psychosomatic (based on a lack of knowledge), then they are actually doing nothing wrong.

There is also the simple question of priorities. The CDC are likely more focused on larger diseases that affect a larger percentage of the population. And rightly so, even though it is unfortunate for us.

What do you want me to say? There are valid arguments for each of the above. Advocates have been debating all of these issues for decades. In reality not an inch of ground has been gained in finding a definition or treatment that is adequately tailored to me/cfs. None of the options are palatable, or likely to see a cure in the short to medium term.

 

[Holmsey]

Cort and Robert can no longer be called me/cfs advocates.

Hi Rusty, that's too big a leap for me I'm afraid, I understand your frustration but things are rarely as they seem. What you appear to be implying is that they've both been bought out, I can only speak for myself but no amount of money would make up for the lack of a cure, how do you even start to enjoy it when you have this illness!

From that standpoint alone I trust that Cort has different expectations / reasons for the move. With regards to Robert, I'm not familiar with him or his wife, but you do indicate that the position with Cimmaron was undertaken by his wife, while I'm sure they talk I don't assume they talk for each other, and this situation effectively, as a couple, puts them both inside and outside the box, that has to be good for us I'd say.

Most things look best looking back, lets just acknowledge the situation we have for now and see what comes of it moving forward.

Regards,

 

[In Vitro Infidelium]

Of late we have seen a relatively new tactic being employed by research/treatment centres to bring in the dollars: the employment of highly visible and respected advocates. 'AB' is one notable recent addition to the ranks of Simmaron, the wife of 'CD' being another. ............

'AB and 'CD' can no longer be called me/cfs advocates.

I''ve edited the names because they are actually irrelevant to any point I want to make, and frankly this whole thread seems to consist of 'dumping'. The most egregous problem though with the contention above, is that someone (in this case 'CD' but coud be absolutely anybody), is to be deemed exceptionally unrepresentative because of their spouse's employment. This is a grotesque proposition and rates as some kind of double application of the ad hominem fallacy wher someone's words are judged unfit not merely because they as an individual are 'unfit', but because their spouse is 'unfit'.

And why stop at 'spouse' ? Should the list of "who can not be an M.E/CFS advocate" not include all family, near neighbours, friends, acquantances etc, of anyone who might happen to hold some contractual arrangement with some organisation one or other of us happen not to like ? One could define it as the M.E/CFS approach to community building.

IVI

 

[asleep]

I''ve edited the names because they are actually irrelevant to any point I want to make, and frankly this whole thread seems to consist of 'dumping'. The most egregous problem though with the contention above, is that someone (in this case 'CD' but coud be absolutely anybody), is to be deemed exceptionally unrepresentative because of their spouse's employment. This is a grotesque proposition and rates as some kind of double application of the ad hominem fallacy wher someone's words are judged unfit not merely because they as an individual are 'unfit', but because their spouse is 'unfit'.

And why stop at 'spouse' ? Should the list of "who can not be an M.E/CFS advocate" not include all family, near neighbours, friends, acquantances etc, of anyone who might happen to hold some contractual arrangement with some organisation one or other of us happen not to like ? One could define it as the M.E/CFS approach to community building.

IVI

Not only is this not a "grotesque proposition," it is a very pertinent and very commonplace consideration. Familial, esp. spousal, conflicts of interest are always relevant in legal, ethical, business, medical and other situations.

Suppose someone is leading an large investigation into the safety of a drug and their spouse is the patent-holder.

Suppose someone is an anti-drone warfare advocate and their spouse owns drone production defense contractors.

Obviously these are relevant things to consider in analyzing the integrity of the situation. If one happens to believe that an organization like Simmaron wouldn't receive extensive HHS funding without serving as a CAA-like toady to the predominate CDC/NIH viewpoint (even if only indirectly through having only their viewpoint-aligned studies funded), then naturally these associations are incredibly pertinent to the independence and integrity of advocates. It doesn't imply that their advocacy is necessarily compromised, but such conflicts of interest must be considered.

 

[Enid]

What deviousness are you looking for Rusty - Cort is with us (always has been) - nothing to consider except the ongoing global research findings in the pathology findings of ME. I have to live, they have to live too.

 

[beaker]

If that's your point, then I stand corrected. But are you claiming that the CDC is aware that ME/CFS is a physical (neurological or immunological) illness, but try to hide this fact, or try to force patients back to work nevertheless? Or are you saying that they simply believe that ME/CFS is psychosomatic? If there is in fact evidence that they are withholding information, then that is a grave matter. But if they are simply acting on the belief that ME/CFS is psychosomatic (based on a lack of knowledge), then they are actually doing nothing wrong.

There is also the simple question of priorities. The CDC are likely more focused on larger diseases that affect a larger percentage of the population. And rightly so, even though it is unfortunate for us.

In any case, if "the government" (I take it you are referring to the US government?) does not believe we are sick, why are they funding Simmarons immunological research? That doesn't seem to make any sense.

I highly recommend you read "Osler's Web" to get an idea of the history of this illness in the US and how the CDC responded. ( or didn't respond)
They have had golden opportunities to explore multiple cluster outbreaks and botched it.
Back in the 80s this was viewed as a new contagion. They wanted to squash. Too much going on with AIDS . don't need some other infectious agent out there.
and so they did.

There are many many illnesses that affect fewer persons and do not at least appear to have some infectious nature(me/cfs does by virtue of aforementioned clusture outbreaks) that get much more funding then this illness. It is not that they are focusing on "larger diseases... and rightly so " No. they are spending much more on smaller population illnesses.

 

[snowathlete]

Not sure how posters arrived at the conclusion that I said the government wants us to be sick. The point is they don't think we are sick. The reason PACE, GET, CBT, Lightning programs are vigorously endorsed by various governments, is because they don't think we are sick. Millions are spent on these programs, despite their failure, in an endeavour to get us back to work.

And for those who think still have doubts about this, ask Australian and UK patients how difficult it is to get on a pension, without facing skepticism and indifference from everyone in the chain from doctors to government departments. I seriously doubt the situation is all that much different in the US. These governments think we should be working and they try very hard to get us to work, even if it means denying pensions.

Okay I understand what you're saying but that's just one interpretation. Im in the UK and I think the more likely explaination is because those therapies are cheap. Yes there are still people who think the illness isn't real or is psychological but things have progressed somewhat, and its officially accepted that it is a real neurological illness. Of course there are groups like Wesley's that still try and keep treatments in the stoneage and that does have an impact. What does the government do in this situation? Well they can't spend huge sums on treatments because there aren't any accepted treatments so it would be a waste of money. What the NHS has lots of in its workforce are therapists of various sorts being promoted by some, so they provide 'treatments' like GET, pacing and good old trendy CBT. Cheap as chips.

To get back to the core topic, we know that people like Cort do think ME/CFS is real and inadequately funded, viewed etc. surely then it is good that people like Cort are getting funded by the government and that seems to undermine your argument. Don't you think? If what you say was true then the government would not fund groups holding views like Corts.

 

[In Vitro Infidelium]

Not only is this not a "grotesque proposition," it is a very pertinent and very commonplace consideration. Familial, esp. spousal, conflicts of interest are always relevant in legal, ethical, business, medical and other situations.

Suppose someone is leading an large investigation into the safety of a drug and their spouse is the patent-holder.

Suppose someone is an anti-drone warfare advocate and their spouse owns drone production defense contractors.

Obviously these are relevant things to consider in analyzing the integrity of the situation. If one happens to believe that an organization like Simmaron wouldn't receive extensive HHS funding without serving as a CAA-like toady to the predominate CDC/NIH viewpoint (even if only indirectly through having only their viewpoint-aligned studies funded), then naturally these associations are incredibly pertinent to the independence and integrity of advocates. It doesn't imply that their advocacy is necessarily compromised, but such conflicts of interest must be considered.

We are not talking about Government contracts - we are talking about freedom of expression and qualifications of 'belonging'. When people start to argue that someone has no legitimacy of expression on a particular subject or right of belonging to a particular group, because of who they are married to, I believe reasonable people should be concerned.

IVI

 

[adreno]

I highly recommend you read "Osler's Web" to get an idea of the history of this illness in the US and how the CDC responded. ( or didn't respond)
They have had golden opportunities to explore multiple cluster outbreaks and botched it.
Back in the 80s this was viewed as a new contagion. They wanted to squash. Too much going on with AIDS . don't need some other infectious agent out there.
and so they did.

There are many many illnesses that affect fewer persons and do not at least appear to have some infectious nature(me/cfs does by virtue of aforementioned clusture outbreaks) that get much more funding then this illness. It is not that they are focusing on "larger diseases... and rightly so " No. they are spending much more on smaller population illnesses.

Thanks for the recommendation. I have quickly read a summary of the book. It seems it is claimed that the CDC has not responded appropriately to ME/CFS. Whether that is true or not, I do not know. But, when accusing someone of a crime, you have to be able to provide a motive. So far, I cannot find one. Why would the CDC be dismissive of our particular disease, in spite of hard physical evidence? Especially if they, as you claim, spend more resources on lesser diseases? What makes our disease special? You say it's because they had enough on their hands with AIDS already. That doesn't seem like a likely explanation. We are talking about a very small epidemic, involving less than 50 people.

There just doesn't seem to be an incentive here.

 

[barbc56]

What is often seen as a "conspiracy" is often just the bungling nature inherent in a bureaucracy. Hindsight is 20/20.

 

[adreno]

It seems that Hilary Johnson (author of Osler's Web) hasn't been able to provide the motive either:

That federal officials ignored disease phenomena and rarely examined patients is Johnson's explanation of why they are resisting acknowledging the disease. Yet her explanation is inadequate, since the question of their motivation remains. The book presents strands of a cultural analysis (e.g., Straus's ill-concealed sexism) and hints of economic analyses (she names physicians who are more concerned with the potential insolvency of insurance companies than with patient well-being). And much of the story unwittingly illustrates Thomas Kuhn's characterization of normal science as inherently resistant to novelty. The thin line between normal science and propaganda is also evident from Johnson's account. But Osler's Web never quite achieves the synthetic grasp of concepts necessary to address properly the pervasive policy abuse it so convincingly exposes.

http://www.cfids-cab.org/MESA/reviews4.html

 

[asleep]

Thanks for the recommendation. I have quickly read a summary of the book. It seems it is claimed that the CDC has not responded appropriately to ME/CFS. Whether that is true or not, I do not know. But, when accusing someone of a crime, you have to be able to provide a motive. So far, I cannot find one. Why would the CDC be dismissive of our particular disease, in spite of hard physical evidence? Especially if they, as you claim, spend more resources of lesser diseases? What makes our disease special? You say it's because they had enough on their hands with AIDS already. That doesn't seem like a likely explanation. We are taking about a very small epidemic, with less than 50 people.

There just doesn't seem to be an incentive here.

You seem to be suggesting that the question of whether or not the CDC responded (and continues to respond) to ME/CFS with negligence and dereliction of duty requires a well-known, widely-accepted motive in order to even be considered. I think this is backwards. The "what" (negligence) is very well documented. The "why" may be unknowable or irrational (or even merely accidental incompetence), but that doesn't mean that negligence hasn't occurred and cannot be acknowledged for the betrayal of public trust that it is.

Furthermore, it seems a bit presumptuous for someone to implicitly position themselves as some ultimate arbiter of what constitutes a valid or likely incentive, esp. if they admit to being uninformed of major accounts of the history of the disease.

 

[adreno]

You seem to be suggesting that the question of whether or not the CDC responded (and continues to respond) to ME/CFS with negligence and dereliction of duty requires a well-known, widely-accepted motive in order to even be considered. I think this is backwards. The "what" (negligence) is very well documented. The "why" may be unknowable or irrational (or even merely accidental incompetence), but that doesn't mean that negligence hasn't occurred and cannot be acknowledged for the betrayal of public trust that it is.

Incompetence doesn't seem likely if they in fact were shown evidence of the disease. In that case, it is called deliberate negligence, and that would require a motive, presumptuous as you may find it.

There is another explanation that I find more realistic than the conspiracy theory you seem to support. That is that the evidence shown to the CDC at the time were in fact not strong enough for them to be convinced that this was a new and separate disease.

During history, unexplainable symptoms have been ascribed to hysteria, possessions etc when no physical explanation could be found. That doesn't imply a conspiracy, though.

I am not saying a conspiracy is impossible, but I am saying that I find it unlikely. And especially so because none of the persons conjuring up said conspiracy theory can come up with an incentive to show why this is the case.

Of course, you are welcome to believe the government is "out to get you". I just don't see why they would be out to get you, and not a sufferer of MS or another illness.

 

[Nielk]

I think that we can all agree that there has been at best gross neglect by the US health government agencies. This is somewhat improving yet is still ongoing. In addition, the funding from NIH for ME/CFS has been minuscule.

All this history and current events have made us a very angry, resentful group - understandably.

My husband has a favorite saying: "we are, where we are". The past is done. There is not much that we can do about that.

The question is what do we do now in the current position that we are in to best serve our community of very ill patients?

I don't think that we are serving our community best by picking on advocates who chose to align with specific ME/CFS centers. These advocates are not the enemy. Like us, they seek solutions for our dilemma.

At the one hand, we complain that we get a meager amount of funding from the government. At the other hand, we are to shun researchers who accept government funding?

We can keep complaining about the "name" and just dig ourselves in place, finding that we are stuck and no movement is possible.

We seek research for ME/CFS to find real biomarkers yet, if some researchers pick certain avenues to research we fight it by saying that is not the proper research IMO.

I think that in this current position, all we are doing is running (I wish!) in circles and trying to catch our tail.
WE ARE NOT GETTING ANYWHERE.

If we would just open our eyes to the reality that is, we would see how much advances have taken place in the past year for awareness, advocacy, funding and acceptance of ME/CFS.

Are we where we would want to be? Not by a long shot but to keep complaining about our sad history will not get us there. It is just dividing us.

 

[K2 for Hope]

Sorry, guys, but having Simmaron doing research on ME/CFS (along with other NEID's) doesn't sound like a bad thing to me. I thought that was our biggest beef - nothing was being done.

Now that someone has stepped up to the plate and asked some of the more visible ME/CFS advocates to help them, doesn't sound like an anti-ME/CFS issue.

I also have read some information about the new OMI's initiatives:

http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

From OMI's page on the Initiatives:

"ME/CFS is a debilitating disease affecting neurologic function, metabolism, hormonal regulation, circulation/blood pressure, and overall well being. ME/CFS affects over 8 million patients worldwide. It has few options for accurate diagnosis and treatment.

Patients with ME/CFS desperately need answers. We are convinced these answers are readily available if we apply the best resources in a large-scale, concerted effort. Bringing together the right experts and the most advanced technologies to deliver actionable results is a necessary condition for success that has been a long time coming to this field."


I am personally very happy that some "organizations" are helping to research this illness and may possibly help the many of us who suffer. Both organizations are also giving ME/CFS more publicity.

I would welcome any others to do the same. If you look at the researchers on the OMI list, it is impressive. And Simmaron's research may reveal something that may help millions of people affected with any of the NEID's.

So, why are we now so opposed to these businesses asking advocates to help them? Isn't that what we asked the advocates to do? Advocate for ME/CFS?

Just wondering....

 

[taniaaust1]

I am perhaps reassured by initiatives such as the OMI whereby experts are coming together to share what it is they are doing separately, and pooling knowledge. As a patient I do find it hard to follow who is doing what and how. Perhaps it is just my lack of comprehension but for some time know I have felt we are 'spinning our wheels' over research.

Yeah its great what they are doing now to come together and share findings etc. That will truely help progress along.

The "spinning the wheels".. the thing which has done that and wasted so much of the gov funding going into ME/CFS has been all those hundreds (or thousands) of psych studies, if people want to get angry at something.. get angry at that waste of funding... they havent seemed short of funding for "those" studies.
What have we learnt from all those?? basically nothing... as here we are... so many of us sitting on Disability Pensions etc unable to work due to so much money put into something useless to most of us in getting us back to work etc etc (now that would be what I call "real" improvement).. Those useless psych studies, that's the wheels which need to stop spinning.

If that money had been put into other ME/CFS research, we'd be far more ahead today with it all.. and maybe even this disease would of been worked out by now.

Not sure how posters arrived at the conclusion that I said the government wants us to be sick. The point is they don't think we are sick. The reason PACE, GET, CBT, Lightning programs are vigorously endorsed by various governments, is because they don't think we are sick. Millions are spent on these programs, despite their failure, in an endeavour to get us back to work.

And for those who think still have doubts about this, ask Australian and UK patients how difficult it is to get on a pension, without facing skepticism and indifference from everyone in the chain from doctors to government departments. I seriously doubt the situation is all that much different in the US. These governments think we should be working and they try very hard to get us to work, even if it means denying pensions.

It is the CDC which coined the phrase ''chronic fatigue syndrome''. It is the CDC which established definitions that in essence define me/cfs as fatigue. It is this demeaning and misleading phrase which has contributed to social and medical disregard for the illness.

For those who still doubt the validity of my argument, there are many threads on this forum which go into great detail on these matters, citing CDC comments, patient experiences, documenting aspects of government policy. The mountain of evidence is quite overwhelming.

And its the CDC who we should be blaming at the dismal way things still are today not those who are trying to help us and help prove there are very real issues going on in our illness. They have a heck of a lot of making up to do before the damage they've done over years and years is corrected.

 

[taniaaust1]

Thanks for the recommendation. I have quickly read a summary of the book. It seems it is claimed that the CDC has not responded appropriately to ME/CFS. Whether that is true or not, I do not know. But, when accusing someone of a crime, you have to be able to provide a motive. So far, I cannot find one. Why would the CDC be dismissive of our particular disease, in spite of hard physical evidence? Especially if they, as you claim, spend more resources on lesser diseases? What makes our disease special? You say it's because they had enough on their hands with AIDS already. That doesn't seem like a likely explanation. We are talking about a very small epidemic, involving less than 50 people.

There just doesn't seem to be an incentive here.

I dont have any idea where you got that only "50" people were affected in the Lake Tahoe outbeak... it was over a thousand affected in this outbreak.. I'd like to know how you come up with saying only 50 people affected???.. Dr Cheney and Dr Daniel Peterson were the doctors who had to deal with those from this outbreak and of cause they both are still seeing ME/CFS patients today. I think this kind of "trivalizing" of an serious outbreak in which affected so many.. would be quite upsetting to those who were affected in it. I find it upsetting and I wasnt even in that outbreak.. upsetting as its just a gross trivalization of the whole ME/CFS thing.

Also from your posts.. it is obvious you are not at all aware of all the things which have happened with the CDC over the years eg misappropiation of funding which was meant to go towards ME/CFS is one, they used it for other reseach as they didnt see ME/CFS as a serious disease . This all is common knowlege and can be verified if you do a search... it got whistleblown and there was a gov investigation over how the funds were misused etc. This is just one thing which has gone on with the CDC and us.

Being in denial of what has happpened to many and putting out wrong facts on it isnt much different to someone denying the Jewish Hollocaust happened to Jews, I cant express how wrong I think it is to go publically trivalising events which affected so many seriously.. I dont understand why you are doing this to the community. Its the last thing we need to have this illness being trivalised among our own community by those who dont have the knowledge into what they are saying and expressing as facts. Please research things far more.

 

[beaker]

Thanks for the recommendation. I have quickly read a summary of the book. It seems it is claimed that the CDC has not responded appropriately to ME/CFS. Whether that is true or not, I do not know. But, when accusing someone of a crime, you have to be able to provide a motive. So far, I cannot find one. Why would the CDC be dismissive of our particular disease, in spite of hard physical evidence? Especially if they, as you claim, spend more resources on lesser diseases? What makes our disease special? You say it's because they had enough on their hands with AIDS already. That doesn't seem like a likely explanation. We are talking about a very small epidemic, involving less than 50 people.

There just doesn't seem to be an incentive here.

It sounds like you haven't been around very long. Sadly I have been.
50 ?? I have no idea where you get such a number. are you thinking perhaps of one particular cluster outbreak somewhere ? can't think of one of that number.
There were many cluster outbreaks all over the states that seemed to all happen/explode in the mid 80s. --- Incline Village, Charlotte, Lyndonville, Pittsburgh, SF... and well, more than I can remember.
I don't have the numbers handy.... so I will just list the few that are in my head at the moment.
I do know that over 250 people got sick in lyndonville. most of them kids.
First handed, I was in SF and 2 friends got sick at the exact same time( as in can pinpoint it to the same night) , as did several family members of co workers, friends of friends. Everyone knew someone.....
Support groups in the city were popping up all over town and Carol Jessup's practice exploded. Lecture halls were filled with patients and family members. Wait lists were long for any doctor that was willing to see anyone with the flu that wouldn't go away. It is harder to equate a cluster in a big city. But there was certainly an outbreak in SF at the time. And of course there were many pilgrimages to Incline Village.
In LA it was known as the "screen writers disease" . another not so small cluster. A friend was sadly a member of that group.
There are many more listed in the book. ( osler's)
It was not a small epidemic at all. It still isn't.
And actually going back in history, it wasn't -- it was just called various names at different times. ( I think it was Bell who wrote a book "a disease of a thousand names" and researched all the past outbreaks and names going back in time.

 

[Dan_USAAZ]

Thanks for the recommendation. I have quickly read a summary of the book. It seems it is claimed that the CDC has not responded appropriately to ME/CFS. Whether that is true or not, I do not know. But, when accusing someone of a crime, you have to be able to provide a motive. So far, I cannot find one. Why would the CDC be dismissive of our particular disease, in spite of hard physical evidence? Especially if they, as you claim, spend more resources on lesser diseases? What makes our disease special? You say it's because they had enough on their hands with AIDS already. That doesn't seem like a likely explanation. We are talking about a very small epidemic, involving less than 50 people.

There just doesn't seem to be an incentive here.

Your review of the book summary was not very educational. While it has been a long time since I read the book, I believe the following took place. There was an accusation of a crime. There was an investigation by the GAO. There were hearings. Entities within the CDC were found guilty of misappropriation of funds.
The paltry amount of money that was allocated to CFS research was being stolen and used in other areas of research.

 

[alex3619]

Thanks for the recommendation. I have quickly read a summary of the book. It seems it is claimed that the CDC has not responded appropriately to ME/CFS. Whether that is true or not, I do not know. But, when accusing someone of a crime, you have to be able to provide a motive. So far, I cannot find one. Why would the CDC be dismissive of our particular disease, in spite of hard physical evidence? Especially if they, as you claim, spend more resources on lesser diseases? What makes our disease special? You say it's because they had enough on their hands with AIDS already. That doesn't seem like a likely explanation. We are talking about a very small epidemic, involving less than 50 people.

There just doesn't seem to be an incentive here.

There is no easy to find rational incentive, but the CDC has been caught out twice I believe, people lost their jobs over this. Congress is not happy when money allocated to CFS research is spent on other things.

Now we can argue about whether or not the CDC mis-spent the funds due to thinking other disease more important (entrenched bias) or being dismissive of CFS (oh look, more entrenched bias). The issue though is that while personel at the CDC changed, the direction at the CDC didn't. They have a huge credibility problem and they will have to do much better to regain my respect.