Jeannette Burmeister acquired foia document re. P2P

[Valentijn]

A new blog and document from Jeanette are up at http://thoughtsaboutme.com/2014/11/...patients-nor-science-meant-to-be-part-of-p2p/

Lots of good comments in her blog about the contents this time.

 

[A.B.]

So what is the purpose of the P2P? I'm guessing the purpose is to avoid taking responsibility by portraying CFS as trivial condition, treatable with some lifestyle changes. To reach this conclusion, they have to ignore a substantial amount of research, as well as patients and biomedical researchers. Does anyone have a better explanation?

 

[alex3619]

I think you cannot get a grip on the P2P without considering what it is. Its NOT about science or medicine, the process used is definitely not scientific. Its managerial. Its about how bureaucracy can manage. So its a bureaucratic process, stupidly ported from areas where it is more applicable to ME and CFS where it is highly inapplicable.

To err is human, but to really bungle is bureaucratic.

This is part of an unfolding impact of EBM, Evidence Based Medicine, and the dominance of that being used to push through management decisions and processes in medicine. Science is secondary. This ties into economic rationalism, or efficiency in public spending. This ties into the ideology coming from the biopsychosocial proponents on the extremes of that ideology.

In my opinion, in part this is about patching problems, rather than solving them. Patch on patch on patch. Given the cost of many diseases which get little research funding, and given that ME is at the bottom of that pile or very close to it, its a flawed process that will inevitably be seen as an utter failure, and bureaucracy, government, politicians and doctors (and especially medical organizations) will have their reputations tarnished yet again. Hence the need for damage control. They are of course hoping that by the time this comes to light the current administration will be gone ... every administration hopes that, but at some point the music stops.

This is playing political party games with the health of millions.

Let me be clear though. I am not suggesting some vast conspiracy. What I am suggesting is the natural order ... systematic human stuff-up. I don't doubt there are small groups colluding to make things go specific ways, but its not a grand conspiracy in my view ... but as the outcome is roughly the same either way its largely a moot point.

 

[Valentijn]

The most surprising thing I've gotten from the FOIA documents is that everything they're doing is political and bureaucratic. There's not a whiff of science or scientific thinking, or even critical thinking. As something which is intended to be a scientific medical organization, the NIH is a failure.

 

[alex3619]

There's not a whiff of science or scientific thinking, or even critical thinking.

That is what often distinguishes Evidence Based Practice from Evidence Based Medicine. In EBP its an essential, in EBM it appears that science and critical thinking are optional, and data manipulation is preferred.

 

[Hate ME/CFS]

After this anti-science, P2P Workshop is over, we should know who some of the real crooks are. The ones who claim that we can be cured with Anti-depressants, and CBT/GET. We already know that CAA/SMCI, Pandora/WPI are only looking out for themselves, and to hell with the rest of us. Real nice touch to schedule this at the start of the Holiday Season, when they know patients will be stressed.

 

[Seven7]

After this anti-science, P2P Workshop is over, we should know who some of the real crooks are. The ones who claim that we can be cured with Anti-depressants, and CBT/GET. We already know that CAA/SMCI, Pandora/WPI and Robert MIller are only looking out for themselves, and to hell with the rest of us. Real nice touch to schedule this at the start of the Holiday Season, when they know patients will be stressed.

That is a very good idea, write a very good article who after all the physical evidence still stand by those obsolete theories, and make a very professional article and start referencing to those ideas as obsolete. We can shape history.

 

[Valentijn]

We already know that CAA/SMCI, Pandora/WPI and Robert MIller are only looking out for themselves, and to hell with the rest of us.

I don't think it's fair or appropriate to characterize all of these entities as "only looking out for themselves". Robert Miller, for example, is trying to help change things by working with these agencies. I think that is a valid approach, just as more direct opposition is also a valid approach. In the FOIA emails, he is being very conciliatory, but is also asking hard questions - and then getting mocked behind his back by the NIH employees.

Both working with the agencies which are creating harmful reports, and opposing those agencies and/or their reports, are sensible avenues for patients to try. If working with these agencies is a failure, that is solely the fault of those agencies - not the advocates who are making a good-faith effort to gain progress.

 

[RustyJ]

I don't think it's fair or appropriate to characterize all of these entities as "only looking out for themselves". Robert Miller, for example, is trying to help change things by working with these agencies. I think that is a valid approach, just as more direct opposition is also a valid approach. In the FOIA emails, he is being very conciliatory, but is also asking hard questions - and then getting mocked behind his back by the NIH employees.

Both working with the agencies which are creating harmful reports, and opposing those agencies and/or their reports, are sensible avenues for patients to try. If working with these agencies is a failure, that is solely the fault of those agencies - not the advocates who are making a good-faith effort to gain progress.

What if those who are working with the agencies are enabling those agencies, unwittingly or not? This is the crux of the matter.

 

[Valentijn]

What if those who are working with the agencies are enabling those agencies, unwittingly or not? This is the crux of the matter.

I think it's still a matter of the agency failing to do its job. If no one gets involved by trying to work with those agencies, that's one less hurdle that's preventing those agencies from running over us.

Ideally, I'd like to see ME patients simultaneously attacking the problem from all legal and rational angles, and supporting each other in doing so in a critical and objective manner.

 

[RustyJ]

I think it's still a matter of the agency failing to do its job. If no one gets involved by trying to work with those agencies, that's one less hurdle that's preventing those agencies from running over us.

Ideally, I'd like to see ME patients simultaneously attacking the problem from all legal and rational angles, and supporting each other in doing so in a critical and objective manner.

The agency/agencies are doing their job successfully - it depends on what you define as their job. Their roles are to manage issues, not get to the bottom of an illness. So from that perspective, any cooperation must be seen as enabling.

Those patients seeking solutions from the bureaucratic machine aren't likely to succeed because they aren't on the same playing field.

P2P and IOM reviews had their outcomes pre-ordained. They were set up to provide bureaucratic solutions. That is how bureaucracies work. Rule No 1 for a government bureaucracy: don't start a review unless you know the outcome.

Getting patient cooperation is just icing on top.

Legal solutions just got a lot harder, because P2P bundled up most of the biophysical me/cfs research and junked it.

P2P officially came out and said there is no viable research. That's what it was set up to do. In other words if there is no viable research, there is no definition and no disease. P2P made it a lot easier for IOM to return us to the pre-ICC days.

So for all the cooperation from those working with the agencies, we have gone backwards. We've lost a decade and god knows how many years to come.

 

[Bob]

We all knew that the P2P review wouldn't endorse any biomedical research, because there isn't any research of a good enough quality, because ME/CFS has been starved of funds for so long. So it's no surprise to me that P2P hasn't highlighted any biomedical research or come to any conclusions about ME/CFS.

Anyone who says P2P should have endorsed, for example, the CPET research obviously hasn't looked closely at the research. It's interesting research, but it's not been done on a large enough scale, to be taken seriously as conclusive research. And the outcomes have also not been entirely consistent, with successive research studies. I think even the authors of the CPET studies have acknowledged that replication studies are needed. The CPET research is interesting and useful, but it has a long way to go to be rolled out on a national scale for identifying ME patients.

I'm not sure if the P2P process in itself was corrupt... It's the system that initiated the failed P2P process that is lacking in integrity.

 

[Bob]

We already know that CAA/SMCI, Pandora/WPI and Robert MIller are only looking out for themselves, and to hell with the rest of us.

Do we? I don't. They might not be perfect organisations or individuals, but I don't agree with your assessment.

What about the recent pilot studies that the CAA have funded? Are you really saying that they are useless? They are some of the strongest and most promising ME research studies that I've seen being initiated, by some very competent researchers.

I also disagree that we should vilify anyone who has a different approach to advocacy than ourselves. Vilifying those with whose advocacy methods we disagree, is quite a messy business. Where does it start and where does it stop? Do we accuse everyone who engages with the system of being out for themselves etc.? Do we accuse everyone, with whom we disagree, as being out for themselves? Are you out for yourself?

Have you heard of the phrase "divide and conquer"? In some ways, you've let the system win by vilifying the ME organisations and patients whose methods you don't agree with. We are busy fighting among ourselves, while the system carries on regardless.

I don't believe that those individuals or organisations have bad intent... There are many different approaches to advocacy, and I don't think anyone has a monopoly of wisdom about the best approach to take.

Many of us on this forum have contributed to the IOM and P2P processes, so are we just "out for ourselves"? Are we all to be vilified? I've submitted evidence to the IOM committee... All of my submissions were against the cognitive-behavioural model of illness, and highlighted the biomedical research and biomedical aspects of the disease. Am I to be vilified? Phoenix Rising made a written and oral submission to the IOM committee, so is the entire forum corrupt?

 

[Bob]

I think an important question for us to consider is: Should anyone in our community be vilified just because of their approach to advocacy, if they mean well? Clearly none of us have easy answers, or we wouldn't be here complaining about the system.

Most of us want the same, or similar, outcomes but we often disagree amongst ourselves with regard to our approach to advocacy.

It's the age-old question... Are you more likely to effect change by working with the system from the inside or by working against the system from the outside? There's no easy answer, and change can be brought about via both mechanisms - sometimes both mechanisms can have influence simultaneously.

We're all put in a very difficult position because of the system that we're fighting. Should we engage with a bad system in the hope of improving it but with the danger of legitimizing it? Or should we boycott the process in the hope that it is not given legitimacy, but with the danger that a bad system will then have the freedom to make bad decisions, enabling it to ride roughshod over our lives? It's not a fair situation for any of us to be placed in. We all want to make the situation better for ourselves and our community.

It's very subjective to say that someone is harming the community because they are unwittingly enabling a harmful system. It could equally be said that someone is harming the community by not working within the system to try to change it. I don't believe that anyone has an easy answer; if someone is well-informed and makes their best effort to effect change then I find it inappropriate to question that person's motives and character esp when we're talking about such a complex system.

It takes more than one person to make change. It takes a movement, and we're all part of that. Let's not focus on individuals. Let's focus on making change.

 

[duncan]

Bob: "Should anyone in our community be vilified just because of their approach to advocacy, if they mean well?"

The short answer is No, but I am concerned your question may be off the mark. First of all, just because an agency or individual claims to be part of our community doesn't mean they are. Secondly, vilified is strong, and few would support that. But to criticize or disagree with, should not only be acceptable, but encouraged, I should think. Finally, "if they mean well" seems to suggest that we have insight into whether or not they do in fact mean well. I would counter by asking should we vilify or condemn the opinions of those if they mean us harm? There will be instances when we cannot know one way or the other, whether their intent is to assist, or harm.

My bottom line here is that constructive criticism and even disagreement among our community should be part of the discussion process, and it is imo healthy and reflective of a good and progressive advocacy in and of itself.

 

[Bob]

...vilified is strong, and few would support that. But to criticize or disagree with, should not only be acceptable, but encouraged, I should think

I agree with you. I was responding to a post which assumed to know the motives of certain individuals and organizations, and then attacked those individuals and organizations based on a personal and subjective interpretation of events, and a difference of opinion about the merits of a method of advocacy. An accusation was made that people and organizations were out only for themselves. That's a case of attacking the individuals themselves (i.e. attacking the integrity of an individual's character) based on a subjective interpretation of complex events, rather than criticising their actions or criticising a certain approach to advocacy. That, to me, equates to vilifying an individual, rather than critiquing their actions.

Finally, "if they mean well" seems to suggest that we have insight into whether or not they do in fact mean well. I would counter by asking should we vilify or condemn the opinions of those if they mean us harm? There will be instances when we cannot know one way or the other, whether their intent is to assist, or harm.

Indeed. It's very difficult to know the motives of individuals, so it's rather dangerous territory to assume to know them, esp when discussing complex areas of advocacy for which there is little agreement about the best course of action. Criticising the actions or opinions of others is perfectly acceptable but is completely different to attacking the character of someone based on a subjective interpretation of events, second-guessing someone's motives, and a personal difference of opinion about the most effective methods of advocacy.

For example, I know the CAA are unpopular, but they've initiated some intriguing and promising biomedical research recently. So things are not black and white in terms of the motivations or actions of the organisation.

Bob Miller was criticised, and I don't know much about him, but in my opinion, Courtney Miller may have successfully carried out the most transformative single piece of ME advocacy when she confronted Obama. So again, advocacy is complex, and a winding path. Sometimes we'll get it right, sometimes we'll get it wrong. I don't think it is constructive or useful to second-guess other people's motives and attack their character when we know little about either of them.

My bottom line here is that constructive criticism and even disagreement among our community should be part of the discussion process, and it is imo healthy and reflective of a good and progressive advocacy in and of itself.

Absolutely.

 

[Hate ME/CFS]

Do we? I don't. They might not be perfect organisations or individuals, but I don't agree with your assessment.

What about the recent pilot studies that the CAA have funded? Are you really saying that they are useless? They are some of the strongest and most promising ME research studies that I've seen being initiated, by some very competent researchers.

I also disagree that we should vilify anyone who has a different approach to advocacy than ourselves. Vilifying those with whose advocacy methods we disagree, is quite a messy business. Where does it start and where does it stop? Do we accuse everyone who engages with the system of being out for themselves etc.? Do we accuse everyone, with whom we disagree, as being out for themselves? Are you out for yourself?

Have you heard of the phrase "divide and conquer"? In some ways, you've let the system win by vilifying the ME organisations and patients whose methods you don't agree with. We are busy fighting among ourselves, while the system carries on regardless.

I don't believe that those individuals or organisations have bad intent... There are many different approaches to advocacy, and I don't think anyone has a monopoly of wisdom about the best approach to take.

Many of us on this forum have contributed to the IOM and P2P processes, so are we just "out for ourselves"? Are we all to be vilified? I've submitted evidence to the IOM committee... All of my submissions were against the cognitive-behavioural model of illness, and highlighted the biomedical research and biomedical aspects of the disease. Am I to be vilified? Phoenix Rising made a written and oral submission to the IOM committee, so is the entire forum corrupt?

 

[jimells]

Let me be clear though. I am not suggesting some vast conspiracy. What I am suggesting is the natural order ... systematic human stuff-up.

I agree it's the "natural order" of a society organized as a series of hierarchies based on fear and coercion. I believe (but have little evidence) that there could be better ways to organize society. Until we as a society find a better way to organize ourselves, there will always be groups like PWME at the bottom of the hierarchy, fighting with all our strength just to avoid being tossed on the scrap heap.

Someday the real researchers will find some answers for our illness, and we will finally be taken seriously. Unfortunately, we will be replaced by some other group of patients who will be despised and sacrificed in our stead.

 

[NK17]

I agree it's the "natural order" of a society organized as a series of hierarchies based on fear and coercion. I believe (but have little evidence) that there could be better ways to organize society. Until we as a society find a better way to organize ourselves, there will always be groups like PWME at the bottom of the hierarchy, fighting with all our strength just to avoid being tossed on the scrap heap.

Someday the real researchers will find some answers for our illness, and we will finally be taken seriously. Unfortunately, we will be replaced by some other group of patients who will be despised and sacrificed in our stead.

Amen ...
Sad awful truth
But that is why we need to leave our testimonies in the form of books, articles, film and documentaries .

 

[jimells]

What if those who are working with the agencies are enabling those agencies, unwittingly or not? This is the crux of the matter.

I think it's inevitable that advocates working different strategies will sometimes end up working at cross purposes. Since no one can predict in advance which combination of strategies and tactics will ultimately prevail, we need try 'em all.

Sincerity and honesty are more important than complete agreement on how we get to the cheese.