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Lipkin, Hornig, Hansen, Davis, Montoya, etc. They are driven to do that. Good for them. Let the NIH get on that bandwagon and be productive and do what is necessary.

Let them read their own IOM report and take action. To me this blog seems to be being gratuitously disrespectful to Dr. Nath misrepresenting what he actually said in a way that is likely to antagonise M.

Walitt received. May I ask what your opinion is of ACT UP- like tactics? Angry demonstrations, disruption of meetings, public accusations that President Reagan and Dr.

Fauci were killing people through their neglect…do you object to that as well? Obviously there is nothing wrong with peaceful demonstrations targeted at politicians rather than scientists e.

I think we have lots to be positive about at the moment. ACT-UP was far from peaceful. It was often creative and always confrontational.

All it does is emphasise his awareness of the importance of patient input to the study of any disease and mention how he saw the importance of this with Act-Up and other patient forums with respect to AIDS in the past.

So, as physicians whatever input we can get from patients is very important through whatever mechanism it is. Any physician will tell you that you learn a lot more from talking to patients than you do from reading any kind of text book, journal, or whatever medical literature that is available.

So — careful listening to patients is absolutely critical. So with that in mind — you know I grew up in the early AIDS epidemic — and I saw interaction with ACT UP and other patient forums whereby they had a great impact on the way disease was handled — treated — and moved the federal government to make changes at every level.

And so — we understand the importance of it — and there are efforts underway to put that advisory group together.

The aids epidemic also brought a number of ideological, energetic, and motivated young people to work — as educators, etc.

Some of these folks are still around. They got things done. Do you want me to throw blood on you? When Dr. For starters, AIDS happened right after the Gay Rights movement had just come together, so there were existing organizations through which action could be taken.

Second, you could be HIV positive but not have AIDS for a while — so you could advocate as a healthy person before you actually got sick. Usually within a year.

And then we languish. I do see healthy advocates, often the parents of sick patients — but often caretakers are as overburdened as we are sick.

CDC and NIH have gotten away with dissing our disease by portraying it as a silly disease of silly women I remember in hearing Bill Reeves describe it — often — as a disease of upper middle class white women trying to have it all.

He expressed great sympathy for us — we tried to do too much and our bodies rebelled. How do you break through? I think it will happen in the opposite direction.

Scientists are going to find that idiot-proof biomarker and the , undiagnosed American patients will GET diagnosed and the nation will realize that they have a health crisis on their hands — and that it happened while CDC and NIH slept.

But I am disappointed with NIH. I meant the comment Theresa left ABOVE, where she asked me who suggested we behave like Act-Up.

I agree completely, Mary. And thanks for the info about the government officials suggesting we act more like ACT UP; very important to know, imo.

Lipkin also suggested we act like ACT UP. Bob Miller asks about discussions with federal health agencies about ramping up research. How about that for a historical reference.

Maybe someone else more able can transcribe her whole statement. That is a good question — and the answer is that the Washington health bureaucracy is ENORMOUS.

Most likely there must be nobody at NIGMS interested in our disease. The latter only does stuff inside NIH.

As for funding, some years ago not that many a subcommittee of CFSAC was assigned the question of why no funding.

And suppose they had? Suppose you end up with Walitt and Saligan — somatoform disorders and catastrophizing personalities? Who got rejected.

Because their view of the disease is quite different from Davis and Lipkin. That stuff happens all the time. We float all over the place.

But … more complicated than that, it turns out. BTW, I do think it both hopeful and promising that Dr.

Thank you, Mary, for your reply. My mind was so overstimulated trying to process everything that I startled as I was falling asleep and woke myself up screaming at the top of my lungs.

I hate that. Anyway, my mind is more focused now and I appreciate your response. When I said they, I meant NIGMS but you answered my question.

It seems like we need a billboard outside NIH so that those who could be interested in ME know that we even exist! Certainly, one would hope that there must be people who work there, who, like Ron Davis, appreciate solving complex medical puzzles and funding extramural complex medical puzzle solvers.

We were cast aside 30 years ago during the AIDS epidemic. We are three decades overdue. I think we also need a PUBLIC APOLOGY and declaration that ME is a biological disease and not a psychological disorder and furthermore, that there will be consequences for those discriminating against ME patients, researchers or clinicians.

Also, no one in the government with any professional history of treating ME as a psychological disorder should be involved with this disease in any way.

I have a right to express my anger to Dr. Nath and Dr. Wallitt about having Wallitt and others involved in this study. Wallitt is publishing falsehoods about our disease in medical journals and then he is the number two on this study.

Also — it depends on the social media i. What is wrong with expressing frustration? I have been sick for 26 years; SERIOUSLY sick for 22 years.

Do they have ANY idea what that feels like? Yes, Ampligen helps, but is not a total cure because I was so severely ill when I started.

And I lost SIX FRIENDS since January. What part of the first amendment does Dr. Nath not understand? We have been trying for decades to get the federal government to take serious action, do research, find treatments, in every way possible, most of it done politely, but strongly and with science behind the work.

Whatever progress has happened has been a result of that. I live in New York and ACT-UP was very active here.

Nothing they did here went beyond the parameters of non-violent civil disobedience. They were loud, yes. They were adamant, yes. But thousands of people were dying, including friends of mine and the government was doing nothing.

People had to act. In fact, Slate magazine linked to a video of a press conference during the Reagan admistration where government officials and politicians were laughing and joking about people dying of AIDS.

I saw it recently. I was shocked, but those were the times. It did take activism to move the government to do the needed research and find AZT, etc.

Controversial aggressive advocacy is fine! For one because there was no possibility that the NIH would agree to something like that or the removal of Saligan or the others it achieved nothing, and, secondly it undoubtedly lost us some potential allies.

So it was a lose-lose proposition; it could only hurt us -it was bad advocacy. So it had the possibility of working and gaining us support at the same time.

And p. And hand our statements to media. Everything I propose to do is within the parameters of non-violent civil disobedience as Thoreau, Dr.

King or Gandhi proposed. And our advocates are doing well and need support. This is a tactic that has been used time and time again when those in power have been trying to silence our community of severely ill patients.

It has been used by Wessely and other psychiatrists in the UK and has been and is currently used by the US government health agencies in order to control us and squash any criticism and dissent.

The ME patient community has been more patient than any other group of neglected patient groups. There is no other group of severely ill patients who would sit by silently for three decades getting almost no attention from the government health agencies — and instead be on the receiving end of false accusations, intimidation tactics, threats and silencing tactics.

For the past thirty years, numerous advocates and advocacy groups have worked effectively on our behalf when engaged with HHS.

They attended meetings, they attended medical conferences, they gave personal testimony at CFSAC and other meetings, they served on panels and workshops, they wrote emails, they made phone calls, they organized demonstrations, they lobbied congress, they served on CFSAC committees — all performed in a courteous, informed yet challenging way.

And despite all of these efforts HHS has responded with inaction and non-compliance — nothing has changed. These recommendations were well researched, stated and written.

However, HHS has denied most all of them. The only way HHS may start to change their policy and the way they fund this disease is if advocates pressure them in ways that they cannot deny us any longer.

An intramural study of 40 patients who may or may not have ME and putting out an RFI will not do! The allegations that our community is crazy, radical or any other derogatory name that they choose to accuse us with, has been shown time and time again to be false.

It is a tactic used by HHS, other government health agencies and even individuals from within the ME community to deflect their own misconduct and neglect and serves as an excuse for keeping our voices silent.

In light of these false accusations, our efforts should increase — to hold HHS accountable for their actions. All advocates and patients have the right to speak their minds when addressing government officials — including Dr.

Change needs to happen on the government side, and it is our right and obligation as citizens and taxpayers to hold HHS accountable.

I also add we can make our demands at demonstrations, picket lines, handing out fliers, speaking out wherever, etc. And whatever works to pressure the government should be done, notwithstanding the excellent work by everyone who contributes to the information at this blog, especially its blogger-in-chief.

She said she found the money allocated for m. Whittemore concluded her talk by soliciting ideas for the way forward. She gave out her email address.

And it makes it easier for these officials to push for a cause when there is a lot of visible, public pressure.

There was not a Voting Rights or Civil Rights law until the Civil Rights Movement was publicly protesting, doing civil disobedience, getting media coverage.

It propelled Congress into acting on legislation and the president to sign it. Before that organized movement, those bills were not enacted.

Also, at that time, brutality against the movement was shown on TV and people around the world saw it. And that put even more pressure on the federal government to do something drastic.

So, what can we do? However, this could help with diagnoses and showing the scientific basis of this as a physical disease. I hope that there is a way that we, including through the media can get that UCSD study out and around on social media.

Bias can be insidious and is not automatically negated by a good study design. And the NIH study is not well designed to counter researcher bias and certainly not as well designed as the Chantix study FDA is concerned is biased.

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