Occupy M.E. (Jennie Spotila): Fact Checking, Dr. Nath

[mango]

Fact Checking, Dr. Nath

This is the first of a two part series. Part One describes the controversy and my fact checking. Part Two will present my analysis of what I found.

As part of the renewed focus on ME/CFS at NIH, the National Institute of Neurological Diseases and Stroke is conducting an intramural study of ME/CFS at the NIH’s Clinical Care Center. Dr. Avi Nath is the Clinical Director of NINDS and the Principal Investigator on the study. Some of Dr. Nath’s remarks on the more controversial aspects of the study gave me pause, and I set out to understand the reality and context of those comments. What I found not only confirmed my initial reaction, but exposes a danger to the quality of the study because ME advocates and federal employees are failing to effectively communicate with each other. [...]

http://occupyme.net/2016/08/23/fact-checking-dr-nath/

 

[JaimeS]

Uh oh. Off to read....

 

[Nielk]

Spreading rumors of allegations of threats by ME patients is an often used tactic in an attempt to silence any criticism of government health agencies's actions - no matter how factually based they are.

This is a tactic of intimidation. It is not enough that we endure neglect and mishandling but we are expected to just accept the abuse in silence. It has become acceptable to defame anyone who dares to criticise - no matter that it's based on facts.

Some of our best advocates have left advocacy because of this intimidating tactic - which at times have been really bullying tactics.

 

[dancer]

Brilliant research from Jennie, and clearly presented.

 

[viggster]

This was a thorough piece of work by Jennie but she did not mention the tweets by a group of patients accusing Dr. Wallit of harming patients & wanting to harm patients.

 

[BurnA]

I read this but I don't get it, what facts were checked ?

 

[Nielk]

This was a thorough piece of work by Jennie but she did not mention the tweets by a group of patients accusing Dr. Wallit of harming patients & wanting to harm patients.

She proved that your allegations like in this post was a fabrication.

Yes, I'm sure when Dr. Nath or Dr. Collins sees the 400th e-mail with the subject "WHY ARE YOU TRYING TO KILL ME PATIENTS!!!" and "WALITT IS TRYING TO KILL US HE MUST GO!!!!!" they are going to take a minute out of their day to see what reasoned, insightful point the writer is making.

 

[duncan]

This was a thorough piece of work by Jennie but she did not mention the tweets by a group of patients accusing Dr. Wallit of harming patients & wanting to harm patients.

Curious observation from an ME/CFS patient.

Do you imagine Dr. Wallit will be an asset to this research? If not, why not? If yes, why?

 

[viggster]

I apologized for the hyberbole in that post, but it is true that patients on twitter were accusing Wallit of intentionally harming patients. I can't pull up the tweets because I blocked all of them.

 

[viggster]

Here's one, for example, and directed to Francis Collins to boot. "Hurts very sick patients."

 

[Nielk]

I apologized for the hyberbole in that post, but it is true that patients on twitter were accusing Wallit of intentionally harming patients. I can't pull up the tweets because I blocked all of them.

You mean patients dared to criticize the fact that Wallit teaches that fibromyalgia and CFS is all in the brain? They pointed out that someone who claims patients should just learn to live with their new reality of living with these diseases because no treatment will ever work for something that is imagined in the brain?

They pointed out that an investigator who has these biased beliefs about an acquired neuroimmune disease should not be part of a study?

How radical!

 

[Nielk]

Here's one, for example, and directed to Francis Collins to boot. "Hurts

Here's one, for example, and directed to Francis Collins to boot. "Hurts very sick patients."

So, you are saying if a very sick ME patient goes to Walitt to be treated and he tells them it's just in their heads - they should just learn to live with it - as this is their new normal, is NOT harmful to patients?

Francis Collins is the one who keeps investigators like Walitt, Giil and Saligan at the NIH. Why does he employ those who have psych bias of biomedical diseases?

I question your judgement @viggster - that you think this is fine and bringing this to light and demanding better for a million severely ill patients is wrong.

 

[me/cfs 27931]

@viggster Many of us have been harmed by treatments from doctors who believe that CFS is all in the head. Some of us for the remainder of our lives.

PS: I did not write any of those tweets, but I would gladly personally receive a thousand angry tweets if it meant I could reverse the damage of those past medical "treatments".

 

[Groggy Doggy]

Spreading rumors of allegations of threats by ME patients is an often used tactic in an attempt to silence any criticism of government health agencies's actions - no matter how factually based they are.

This is a tactic of intimidation. It is not enough that we endure neglect and mishandling but we are expected to just accept the abuse in silence. It has become acceptable to defame anyone who dares to criticise - no matter that it's based on facts.

Some of our best advocates have left advocacy because of this intimidating tactic - which at times have been really bullying tactics.

How were the advocates intimidated or bullied?

 

[Groggy Doggy]

Here's one, for example, and directed to Francis Collins to boot. "Hurts very sick patients."

that's slander.

 

[Groggy Doggy]

@viggster Many of us have been harmed by treatments from doctors who believe that CFS is all in the head. Some of us for the remainder of our lives.

PS: I did not write any of those tweets, but I would gladly personally receive a thousand angry tweets if it meant I could reverse the damage of those past medical "treatments".

Its not Walitt's fault that many of us have been harmed, so why take it out on him? If you were Walitt's patient, and he harmed you, then that's another case.

 

[Groggy Doggy]

So, you are saying if a very sick ME patient goes to Walitt to be treated and he tells them it's just in their heads - they should just learn to live with it - as this is their new normal, is NOT harmful to patients?
.

If that happened to me, then I would find another doctor to treat me. I don't know what options are available to you? In the US we also have attorneys that will sue doctors for malpractice; additionally we can also file complaints (to get their license suspended or revoked).

 

[Denise]

Its not Walitt's fault that many of us have been harmed, so why take it out on him? If you were Walitt's patient, and he harmed you, then that's another case.

I believe some of the concern arose when advocates read articles Walitt co-authored (and presentations he had given) that suggested treatments that are known to be of concern because of their effects on patients. And that would mean that the promulgation of treatment modalities that adversely affect patients is of concern to more than just a patient who was treated by Walitt. So changing healthcare professionals wouldn't solve that.

 

[dreampop]

Very intelligent use of the FOIA. Just a disturbing situation taken together with the Chadler comments. You can't speak up for your illness, you just have to take what you get and be thankful for it, and even then you get painted in a negative light. If its really just a few (mildly) negative tweets than I have to say, these are among the most sensitive people on the planet. I can't imagine what they would do if they had to hear all the shit people say to someone with CFS. I guess its a grey area for people not in public office, but for those in it, even friggin Elizabeth Warren can handle the twitter insults (and the ones she gets are more plentiful and ill natured). Anyway, the Burmeister tweet is over the top, but if your arguing the financial impact of calling a disease "not abnormal" or whatever Wallitt said, then you can't really call it slander.

In fact, I remember that ridiculous thread and how much people wanted to walk on eggshells to accommodate the NIH team. I get it too, you never want to make your disease look bad, but at some point you have to be able to speak up and hold people accountable: and other patients and the medical community should never paint you in a falsely negative light for doing that, that's why I think this is such a "disturbing" situation.

 

[Groggy Doggy]

I believe some of the concern arose when advocates read articles Walitt co-authored (and presentations he had given) that suggested treatments that are known to be of concern because of their effects on patients. And that would mean that the promulgation of treatment modalities that adversely affect patients is of concern to more than just a patient who was treated by Walitt. So changing healthcare professionals wouldn't solve that.

Maybe I need to drink a cup of coffee....but Walitt is not treating patient in the NIH ME study. So you are saying that Walitt treats patients at the NIH, and because of his past videos, it is assumed he is harming them?