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Nath and Walitt combined received fewer than 20 critical emails over the first four months of A few are strongly worded or confrontational, but most are thoughtful and well-reasoned.

There were no abusive or harassing emails. Looking beyond the emails to social media, as Marian Emr suggested, shows that criticism was quite high on blogs, Twitter, and discussion forums.

Nath declined my request to speak and Dr. Nath was referring to, and so our ability to analyze how reasonable his comments were is limited.

In the absence of direct evidence of personal attacks and the like, Dr. Even though no one sent nasty or abusive emails to NIH scientists, even though we raised legitimate criticisms in our social media space, even though Marian Emr could not confirm that anyone had withdrawn from the study, Dr.

Nath is saying we risk insulting scientists who will now withdraw from the study and not want to help us. One scientist I consulted said that Dr. Patients have to speak out and be part of the process.

Scientists must put patients first, not their own feelings. This scientist noted that many researchers are not used to public engagement, and that outspoken patients can be shocking to researchers who have not dealt with it before.

They may not be prepared for the justifiable anger of people who have been sick and neglected for years. As just one example, look at all the protests at the International AIDS Conference.

ACT UP brought the opening ceremonies to a halt, and protested in multiple parts of the conference. But Dr. Nath says ME advocates are too critical, which deflects attention from the substance of those criticisms to the way in which the criticisms were made.

ME advocates have an obligation to point out the flaws in science and policy that affect our lives. We have the right to be angry about how we have been treated, and the ongoing failures to fix the situation.

I wholeheartedly agree that we should not harass, abuse or threaten anyone, but there is no evidence of that in the context of the Clinical Care study.

Angry or strongly worded emails and tweets are unpleasant to read, but do not automatically equal abuse.

Sarcasm does not equal harassment. We are not as numerous, as loud, as omnipresent, as angry, or as bold. Nath seems to think that our substantive criticisms of the study and a few confrontational emails are enough to risk antagonizing scientists.

In my experience, scientists generally have robust egos. Advocates and NIH are talking past each other. Advocates are expressing strong, substantive, and scientifically sound criticisms of a highly significant and long awaited study.

These are two different conversations. Our failure to succeed in having these conversations poses a risk to the ultimate quality of the Clinical Care study results.

Advocates and NIH should have a substantive discussion about the design and conduct of the Clinical Care study. Patients are entitled to a seat at the table.

We have things to teach NIH, and NIH has things to teach us. That process is overdue. Both advocates and NIH would also benefit from discussing how we express and receive criticism.

But this must be a two-way conversation between equals. But the creation of this panel seems to have stalled.

In the April 21st webinar, Dr. Vicky Whittemore confirmed to me that there was nothing to share at that time.

Science requires criticism. In the case of ME, patients and advocates know far more about this disease than scientists who are new to the field.

Those patients were extremely critical, extremely vocal, and extremely active in standing up to the way government scientists wanted to do things.

They also secured patient participation in AIDS research at all stages and at all levels, working alongside scientists to improve their research and to learn information that they could take back to their community.

I wonder if Dr. Nath has missed the point that vociferous criticism is part of our job as advocates. We are obligated to speak out about our disease, our experiences, and the science needed to find answers.

We are fully qualified to participate in the scientific enterprise, and our perspectives are necessary.

Without meaningful participation by patients with a diversity of perspectives, the Clinical Care study is at risk. The controversies over the Reeves criteria and functional movement disorder control group are two examples, and the potential bias of Dr.

Walitt is another. These controversies might have been avoided if advocates were involved at the early stages of protocol design.

I think there are a variety of other ways we could assist as well. For example, the series of tests planned in the study will be quite grueling.

We could help adjust the design to make it easier on participants. In addition, I suspect that the team has not thought through the full spectrum of effects that the study will have on patients — before, during and after participation.

An essay by Kameron Hurley about a different topic explains why:. That, in truth, is the easier narrative.

Change is messy. This is exactly the situation we are in with NIH and other federal agencies. They want us to tone down the anger, and criticize in a more polite and quiet way.

In Dr. There is no question that Dr. Nath is a world-renowned expert who is capable of designing an excellent and elegant study. But some of the scientific decisions made by NIH, including the involvement of Dr.

Walitt, are worthy of criticism. Our criticisms, even the angry ones, deserve a fair hearing. Sit down and speak softly, or not at all.

The appropriate response is to listen , and to consider our points. Then we can partner and learn from each other. And that is essential to producing good science.

Also, you might want to FOIA Dr. He received a few love letters despite not being involved in the intramural study or the working group.

I am not alleging that Dr. Nath did that specifically. He did say that we were antagonizing scientists, and I think it is fair to say that others have at various times dismissed us all as crazy.

The very employment of Dr. Walitt by NIH is questionable. As I understand it he joined NIH only recently, at that in the Nursing institute.

A reliable source indicates that concurrent with his employment he has been behaving erratically and destructively in the lab, failing to attend to samples and such.

My question is whether his take-up by NIH is not an effort to rescue an increasingly dysfunctional worker by having him wrapped in the cotton of taxpayer benefits while truly unable to perform.

In addition, Walitt is in the thrall of Dr. BEFORE Walitt was at the Natl. Institute for Nursing Research, he was at CAM — the Center for Alternative Medicine, which is now called the National Center for Complementary and Integrative Health NCCIH.

What makes that interesting is that in Steve Straus left NIAID to run CAM. Because one person worked the same major NIH Institute that another person formerly worked at they must think alike?

Straus had a lot of influence over those he worked with — Fauci still thinks he was a genius. It has always interested me that the psychobabble out of England never found a home in NIMH, the Natl.

True, I have no evidence he shaped CAM to mirror his worldview, and the man did die of brain cancer in We do know that Nath said he was having trouble getting some researchers to participate in the study apparently because of the controversy raised over Nath.

Not always. Walitt from a small number of statements he made without being aware of his background.

Is that the kind of informed advocacy we want. That he was coordinating patient intake and administering the logistics of the study?

After Dr. Nath made his statement that he was having trouble getting researchers on board a petition on ME Action which was full of inaccuracies — and which in its original form stated that the intramural study would take us back 20 years — was presented to the NIH asking for the removal of three more people from the study including Dr.

Unger of the CDC. Two of them had strong backgrounds in immune research and the molecular basis of fatigue. It too focused on a few comments without bothering to dig deeper.

MEAction also apparently refused to post a link to a blog pointing out the flaws of that petition. I have no fears, though, that he will be a negative influence in the study.

For one, he is coordinating the study — not researching the patients. On the other hand, I believe that we have over-reached several times and that we have not based our advocacy on careful research.

Thousands of people signing a petition asking that Dr. Not learning more about Nath, Saligan, Gill and Unger was not informed advocacy. It recently asked for their ideas on research.

Suggesting the study is at risk is simply wrong and an overreach in my opinion. Would it be best for patients to be involved in the study?

Yes, and hopefully they will be and the study put together by Nath is still simply superb. AGB Datenschutz Impressum. Politik Inland Von Trump zu Biden Ausland Staat und Recht Die Gegenwart Politische Bücher Geschichte Europa denken Briefe an die Herausgeber.

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