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Perhaps Dr. Unger was in a hurry. Perhaps she was distracted. Who knows? You can decide that Dr. By the way, aperson with knowledge of how the exercise study regimen was decided — it was decided between the doctors and Dr.

Unger — told me that the doctors were against having doing it. The study is doing many, many different kinds of tests including numerous immune tests, metabolic testing, several brain imaging tests, autonomic nervous system testing….

How does anyone not doing the testing affect the results? How does Brian Walitt affect those results. For that matter — how does Dr. Unger affect the results of the two-day exercise test that has been purposed?

The researchers in the study will do the testing and write the papers — not Brian Walitt or Dr. Unger or Leroy Saligan, etc. It requires a lot more time and medications do not work very well.

How this happens is not clear but the authors propose that cytokine changes begun in the body by the initial trigger get transmitted to the brain where they become permanent.

They believe a common pathway in all these diseases exists. They signal out the microglia as being key players but admit that they have no idea how they affect cognition.

They list, though, a number of possible factors many of which many be familiar: glutamate induced damage, altering serotonin, dopamine, norepinephrine nerve transmission, GABA, acetylcholine, neuropeptides, and nerve growth factors BDNF increased levels of oxidative stress, nitric oxide.

Epigenetic changes which produce permanent changes to gene expression are the key. When turning to treatment they turn not to CBT or psychological therapies but immunomodulating drugs such as monoclonal antibodies e.

Some controversy was warranted but it could have been leavened by a more complete exploration of Brian Walitt.

You said you thought the study was hurt. This is how I think it may have been hurt. His role in the study — that of a coordinator — should have been emphasized in the beginning.

The fact that none of the research in the study has anything to do with psychosomatism should have been DOUBLY emphasized. At his request, I have removed his comment.

Regarding psychosomatic, psychosomatic does not mean malingering or hypochondriasis. People ARE physically ill.

I hope that this will clear things up. Psychoanalytic Diagnosis, Second Edition: Understanding Personality Structure in the Clinical Process by Nancy McWilliams PhD.

Somatization is on pages Nancy McWilliams PhD teaches graduate school at Rutgers, has a private practice, coauthored the Psychodynamic Diagnostic Manual PDM which is meant to expand on the DSM and ICD, has written several books; some of which are used as college textbooks….

I think Dr. Good science also requires ethics, compassion, humility and humanity. I also posted this video at Health Rising and specifically asked you to watch it Cort.

You said you would watch at least part of it back in March. The second is excerpts from a recently published Brian Walitt paper.

Later, when I was able, I had saved a couple screen shots of quotes and wrote down a couple more. They were the best that I could do and may not be perfectly accurate.

To rely on medications to be the central pillar of your treatment strategy is one that most often fails. In my personal experience I have found that I can definitely make things worse psychsomatically, but that is far from the only cause.

The worst care I have received is from providers that believe it is the only cause. This has been to the point where medication triggers and other easily diagnosable related causes were overlooked to my severe detriment.

My traditional fibro only kicks in when I am very fatigued. GET works for me, I have not been able to find a CBT provider for relevant reasons.

The bias is theirs, not ours originally. We learned over time not to trust all that the NIH, CDC, FDA says or promises.

We must not fall into a defensive posture because of what Dr. The best defense is a good offense. And we have Jennie and others to thank for a fantastic, principled, careful, bull-dog-like offense.

This is another terrific piece of ferreting, Jennie. Thank you again for all you do. The proof is in the action. The values of these investigators in various departments will be reflected in their actions.

Will the NIH really do a study SOON? Will the CDC REALLY incorporate expert and community knowledge into their new educational materials? Will the FDA EVER approve a drug for this disease?

This treatment is Standard Operating Procedure for the establishment — at least Wasserman Schultz and Jon Ralston the Nevada Convention Chair guy got fired.

It is not just ommission of other treaments that result from this constitutionally corrupt behavior it is one cause of many. Perhaps most damning is the whole complex of related disease sources that also come from this same malicious attitude — including the whole range of corporate environmental toxins, and meds.

Its about presenting ourselves as rational potential partners while still pressing hard for change. I would submit that that petition did us no good and could have hurt us.

Nor is effective or responsible to ignore signs that the NIH or CDC or FDA is changing and to assume that the way they are today is the way they are the yesterday.

The presence of the huge intramural study is a very good sign. The fact that the CDC has pulled back greatly on its CBT and GET recommendations is another very good sign.

The fact that the CDC is devoting so much time to the work of Dr. Peterson, Dr. Kogelnik, Dr. Klimas and other is another very, very good sign.

Both Dr. Peterson and Dr. Klimas have publicly requested that some patients give the CDC a break. The fact that Dr. The fact that the CDC is fully engaging with the patients advocates in their education project is another very good sign.

I believe the AIDS activism led to people taking AIDS seriously — and solving it it is no longer an automatic death sentence.

Best of all, the cause is known. Comparing the PACE trial to the NIH intramural study is like comparing apples and grapefruit.

The PACE trial was a clinical trial the results of which mattered very much to the researchers and doctors involved.

The only thing at stake at this trial is Dr. If he finds nothing the trial will have been a failure. If he something significant it will be a success.

The only possible bias, therefore, is TO FIND SOMETHING! You have to ask yourself why Nath would go to such trouble to produce such a huge study with the expectation that it would fail or that he would want it to fail?

What would he get out of that except for looking like an idiot? The easiest conclusion is the simplest. Nath is an infectious disease specialist who focuses on nervous system infections.

He looked at the very common infectious triggers, the symptoms that were caused, the high rates of disability and the past research, and decided based on all that that is a very interesting disease that fits right in with his area of expertise.

So he put together this large and very interesting study to try and crack it. You cannot rid science or scholarship of personal bias — but you CAN understand and try to limit its effects.

In the history of this illness, the role of the psychiatric explanation has been very harmful to both science and patients.

That makes biases in that direction particularly egregious where this study is concerned. And ANYBODY who referred to this disease as a classic case of somatoform condition in a peer-reviewed published article in does not belong in this study, PERIOD:.

My own concern has always been that, with only 40 patients in this study, it is vitally important that the patients IN the study actually HAVE my disease!

It is enormously frustrating to me personally because I have share numerous immune and neurological abnormalities with a clear subset of patients with this disease.

My doctor has been using biomarkers for 25 years. The science outside NIH is all about confirming biomarkers — in particular, finding a biomarker that is idiot-proof, that is so easy to use that you can go to your local Labcorps and they can do it correctly.

The NIH study is in many ways very much behind the curve, because they have refused to allow input from outside the institution.

Leonard Jason has found that they allow patients with major mood disorders to slip into the data set, and do not include the sickest patients.

Having more than that is going to kill the results. Years ago, after getting nowhere trying to get something done about these questionnaires and what was, at the time, called the Reeves Definition, I wrote a blog post about them.

There was only one article validating the questionnaires, and it was a holy mess. Here is my critique of it:. This is what I mean by fighting new battles as if they were old battles.

Therefore his participation is not a concern to me. Mary has been pressing for neuro-immune studies to be done for decades.

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