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

duncan

Senior Member
Messages
2,240
We are not speaking about the opinion of a lone clinician whose sphere of influence is a small cluster of sufferers. We are talking about potential preconceived misconceptions of researchers in positions of influence in govt health agencies - agencies that help set policy and help draft guidelines which can sway thousands of doctors across many different medical disciplines, and impact entire communities of patients.

It is important that honest criticism of the biases which may be imported into a study not be stifled by exaggerated claims of harassment. We have seen how that played out in the UK for ME/CFS advocates. In the US, we have seen similar attempts levied at Lyme advocates.

I think whenever a patient community is at a crossroads in terms of research - but even more so in orphaned and contested diseases - it is dangerous to let feckless accusations deter fair and candid and necessary criticisms of a given study.
 

Groggy Doggy

Guest
Messages
1,130
Very intelligent use of the FOIA.

I think we should always speak up for our rights. Many health care providers I have encountered are incompetent. I try to avoid them by asking friends for referrals or reading online reviews. I used to work with a nice man, whose father was a doctor. His father told him that 90% of doctors are incompetent. I personally agree with that stat. Its sad, but that has been my personal experience.

So whether I am misdiagnosed, mistreated, misled, misadvised, given the wrong treatment, given a harmful treatment...etc...I expect this to happen 90% of the time.

I have spent the last 20 years of my life building a team of health care providers that are excellent. I know they are rare, I appreciate their dedication to putting patients first. I thank my wonderful team every chance I get.
 

Groggy Doggy

Guest
Messages
1,130
We are not speaking about the opinion of a lone clinician whose sphere of influence is a small cluster of sufferers. We are talking about potential preconceived misconceptions of researchers in positions of influence in govt health agencies - agencies that help set policy and help draft guidelines which can sway thousands of doctors across many different medical disciplines, and impact entire communities of patients.

It is important that honest criticism of the biases which may be imported into a study not be stifled by exaggerated claims of harassment. We have seen how that played out in the UK for ME/CFS advocates. In the US, we have seen similar attempts levied at Lyme advocates.

I think whenever a patient community is at a crossroads in terms of research - but even more so in orphaned and contested diseases - it is dangerous to let feckless accusations deter fair and candid and necessary criticisms of a given study.

Agree. I think we only differ in strategy and tactics. Mary S wrote a letter and started a petition, which I signed; I thought she had a very effective strategy.
 

Denise

Senior Member
Messages
1,095
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?

Walitt has indicated that he has treated cfs patients though whether it is at NIH or elsewhere I don't remember.
While he may not be directly inflicting harm on patients, his stated and published/posted views have ramifications on the treatment patients receive. (Just as PACE publications have ramifications on the treatments patients receive.)

As Jennie Spotila's OccupyME post says:
“The most controversial scientist on the intramural study is Dr. Brian Walitt, the associate clinical investigator. In a 2015 interview about fibromyalgia, Dr. Walitt said, “Fibromyalgia appears to be a way that people experience suffering in their body . . . [and] these atypical things are just a range of normal . . . you’re just dealing with the difficulties of just being a human.” In addition, Dr. Walitt and another NIH investigator on the Clinical Care study, Dr. Leorey Saligan, co-authored a paper in which they state that CFS and fibromyalgia are somatoform illnesses (which are psychological disorders).

Not surprisingly, the ME patient community strongly objects to Dr. Walitt’s participation in the Clinical Care study (for example: here, here, here, here, and here). During the NIH’s teleconference with ME advocates in March 2016, Dr. Walitt backpedaled from his previously stated views and said, “[These disorders] are not just in one’s head. They do not reflect some unconscious choice and it is not possible to simply push through the symptoms. . . First let me affirm by saying that Chronic Fatigue Syndrome, Myalgic Encephalomyelitis is a biological disorder.” Science writer Julie Rehmeyer’s request to interview Walitt about his views was declined, and then subsequently criticized by some advocates. For most patients, Dr. Walitt’s prepared remarks at the telebriefing were not convincing.“ http://occupyme.net/2016/08/23/fact-checking-dr-nath/
 

Groggy Doggy

Guest
Messages
1,130
I think you need to be really careful interpreting meaning and context in a medium that's limited to 140 characters. I don't find it slanderous at all, when you read Wallit's papers and watch his presentations, you can understand why she said that. I find the ideas he promulgates harmful to patients.
I read his papers and watched his presentations. I completely understand why any of us would feel that way. I don't think the tweet was most effective way to remove Walitt. It's too easy for the tweet to get misinterpreted; it's 'addressed' to a high US government official. This is my opinion.
 

viggster

Senior Member
Messages
464
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?
You just put a whole lot of words in my mouth. My post did one thing: Point out that Jennie's article did not capture the totality of comments directed to NIH.
 

Groggy Doggy

Guest
Messages
1,130
As a suggestion, the next time we come across someone that we feel is not fit to be in the study, can we discuss it first to see if we can figure out a way where we can come to a consenses where we could all express our voices (in our own style). Maybe leverage each others knowledge to use words or specific phrases? It would be great if we felt we were working together to achieve the same goal.
 

jspotila

Senior Member
Messages
1,099
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.

Actually, I did run a number of searches on Twitter and elsewhere to try and capture at least some of what was said in February and March. I did not find tweets by a group of patients, although I did see the tweet you posted from Jeannette. I'm sure I did not find everything. One of the questions I struggled with is how relevant tweets would be in this context.

If anyone has more examples of tweets that they think crossed the line, email me at jspotila at yahoo dot com. I would appreciate a chance to review them and amend the post if I think it's necessary.
 

Groggy Doggy

Guest
Messages
1,130
Actually, I did run a number of searches on Twitter and elsewhere to try and capture at least some of what was said in February and March. I did not find tweets by a group of patients, although I did see the tweet you posted from Jeannette. I'm sure I did not find everything. One of the questions I struggled with is how relevant tweets would be in this context.

If anyone has more examples of tweets that they think crossed the line, email me at jspotila at yahoo dot com. I would appreciate a chance to review them and amend the post if I think it's necessary.

Hi Jenny,

Since you recently researched the study, can you tell me if Walitt in still assigned to the NIH study? If so, what role does he play (same as back in Feb)? Regarding the NIH study, what is your opinion about how to proceed? I understand it's a balance between requesting further changes (which delays the study) VS proceeding with caution. Are we okay to proceed with caution?
 

Stewart

Senior Member
Messages
291
It's probably unfair of me to pass judgement when only half the article is published - but at the moment this reads like a straw man. It's a very well written and clearly laid out article to be certain, but the central argument seems to be based on deconstructing a claim that Dr Nath never made - namely that the NIH was receiving angry and abusive emails. Jennie may have jumped to this conclusion (as many other people did) but Nath didn't say or even imply it in either of the quotes that the article uses from his webinar.

The first quote was his response to the issue of bias (in which he said this was best dealt with by designing a good study rather than excluding everyone with any sort of bias) and his second quote was about the media and patient reaction to the early trial announcements, and how (in his opinion) the public scrutiny had led to other researchers and scientists indicating that they didn't want to get involved. There's nothing in either of these quotes complaining about 'angry abusive emails' or even suggesting that people were indulging in 'inappropriate or unreasonable' behaviour. He was just making the point that some researchers - now they knew the level of scrutiny they would be subjected to - were backing away from getting involved in ME research, and that this may not be in the best interests of the patient community.

From my recollection, the only time that Nath mentioned emails from the public during the webinar was when he said that he was trying to reply to as many of them as he possibly could, and he asked people to keep them short or he wouldn't have time to read them properly. I don't remember him making any complaints about the tone or language that people were using.

I'll definitely read Part 2 (like I said, it's well written) but it does concern me that - despite the title - no fact checking of anything Dr Nath actually said has occurred so far.
 

Valentijn

Senior Member
Messages
15,786
If anyone has more examples of tweets that they think crossed the line, email me at jspotila at yahoo dot com. I would appreciate a chance to review them and amend the post if I think it's necessary.
I don't think anyone crossed the line into harassment, threats or similar on Twitter. A few people just got stupid and a bit nasty - insulting the wrong targets and failing to clarify their objections.

But I think most ME patients aren't listening to those people anyhow, and many have them blocked. They never contribute anything constructive, and seem more interested in winning some imaginary competition than allowing progress to be made by anyone else.
 

jspotila

Senior Member
Messages
1,099
Hi Jenny,

Since you recently researched the study, can you tell me if Walitt in still assigned to the NIH study? If so, what role does he play (same as back in Feb)? Regarding the NIH study, what is your opinion about how to proceed? I understand it's a balance between requesting further changes (which delays the study) VS proceeding with caution. Are we okay to proceed with caution?

There is very little information available about the NIH intramural study, and my FOIA requests did not ask for documents about the study itself. As far as I know (because NIH has made no announcement to the contrary), Dr. Walitt is still the lead associate investigator on the study. My understanding is that this role involves coordinating among all the investigators, helping to enroll subjects, and shepherding the subjects through the process. I can't recall seeing a more specific job description than that.

Regarding how to proceed, we have no choice but to proceed with caution. This is an important study. Our input would make it better, but as you'll see in part two there is no systematic way that we can provide that input right now. NIH promised several times to create a patient advisory group but that has yet to happen.
 

jspotila

Senior Member
Messages
1,099
It's probably unfair of me to pass judgement when only half the article is published - but at the moment this reads like a straw man. It's a very well written and clearly laid out article to be certain, but the central argument seems to be based on deconstructing a claim that Dr Nath never made - namely that the NIH was receiving angry and abusive emails. Jennie may have jumped to this conclusion (as many other people did) but Nath didn't say or even imply it in either of the quotes that the article uses from his webinar.

The first quote was his response to the issue of bias (in which he said this was best dealt with by designing a good study rather than excluding everyone with any sort of bias) and his second quote was about the media and patient reaction to the early trial announcements, and how (in his opinion) the public scrutiny had led to other researchers and scientists indicating that they didn't want to get involved. There's nothing in either of these quotes complaining about 'angry abusive emails' or even suggesting that people were indulging in 'inappropriate or unreasonable' behaviour. He was just making the point that some researchers - now they knew the level of scrutiny they would be subjected to - were backing away from getting involved in ME research, and that this may not be in the best interests of the patient community.

From my recollection, the only time that Nath mentioned emails from the public during the webinar was when he said that he was trying to reply to as many of them as he possibly could, and he asked people to keep them short or he wouldn't have time to read them properly. I don't remember him making any complaints about the tone or language that people were using.

I'll definitely read Part 2 (like I said, it's well written) but it does concern me that - despite the title - no fact checking of anything Dr Nath actually said has occurred so far.

Thank you for your thoughtful comments, Stewart. I hope you will consider posting them on the blog because I think they are worthy of discussion there as well.

Your main point is that I focused on emails when Nath himself did not specifically say there had been angry emails. You are correct that he did not specifically say there were a lot of angry emails. I started with the assumption that there had been such emails, for two reasons.

First, I assumed that if scientists were upset enough that they did not want to do the science, then it must be in response to some pretty heavy public pressure. One cranky email or even general displeasure expressed in social media spaces did not seem to me to be likely to cause the level of antagonism that Dr. Nath was describing.

Second, in filing FOIA requests, I was limited by the kind of material producible under FOIA. Emails from the public are producible (with names redacted, which I agreed to in advance to speed the production). Internal emails among the NIH employees might be producible under certain circumstances, but in my experience this requires longer waiting times and appealing many redactions. I've had requests and appeals take more than two years to ultimately get the full documents. I didn't want to wait that long for this story.

My original plan when I made the requests was that I would reach out to Dr. Nath after seeing the emails in order to get his perspective and to follow up on the sources of antagonism. Unfortunately, he would not speak with me. Marian Emr from the NINDS communications office did speak with me, but she was not able to answer many of my questions with great specificity.

I hope this answers your question. I look forward to your thoughts on part 2.
 

BurnA

Senior Member
Messages
2,087
Your main point is that I focused on emails when Nath himself did not specifically say there had been angry emails. You are correct that he did not specifically say there were a lot of angry emails. I started with the assumption that there had been such emails, for two reasons.


Should the article have refferred to assumption checking instead of fact checking ? I understand facts were established but I miss the direct checking to what Nath said.
 

A.B.

Senior Member
Messages
3,780
I'm not sure if it's worth arguing over this. I have a lot more trust in people like Lipkin and Davis, and I think it's more important to get on the good side of the NIH to ensure appropriate funding for them, than it is to try and force a paradigm change at the NIH. I think it's pretty clear that a number of people at NIH still believe this is all in the mind but we expressed our disapproval and there isn't much else that can be done.

I think the follow up study will tell us a lot about what direction the intramural NIH team really wants to go.
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
Medical scientists and researchers also seem to NOT take into account that communications to them are coming from sick people. People who in fact may be worn down physically and mentally from literally decades of illness.

There is a big power imbalance between the two groups. We are confined to the bed or sofa missing life. They get to be well paid, well respected influential people with lives and vacations and hobbies and yadda yadda. And they can't take a little flak from people who've been ill treated, marginalised, and discarded? Seriously?

I agree that abuse and harassment and spam (30 posts in a row just being angry) are not to be condoned and are not helpful but they might want to get a little perspective.

I had some other thoughts while I was reading through the blog post but as always since I waited until I had read the whole thing I have no idea what those thoughts were. :bang-head: And no it's not as a result of all my head banging.
 

jspotila

Senior Member
Messages
1,099
Should the article have refferred to assumption checking instead of fact checking ? I understand facts were established but I miss the direct checking to what Nath said.

I did my best. It would have been much easier if Dr. Nath had agreed to speak with me. He could have explained the full context of the antagonism he saw, the risk to the study, etc. And then I would have been in a better position to fact and assumption check it. Instead, I'm limited to the emails I obtained through FOIA, his public comments, what I observed in the patient community, and the conclusions I drew from all of that.