Edward Shorter to give talk on CFS at NIH

J

jadam914

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viggster said:
I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study. The volume and tone of the responses I'm seeing to this talk rival the tone and volume of responses to the announcement of the FITNET trial. That worries me. An objectionable one-hour talk should not prod the same response as a trial that will enroll hundreds of vulnerable children. A sense of proportion of the crime would be helpful.
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Shouldn't it? If we are up there butts all the time about this kind of stupidity maybe they will be worried about making sure they are doing the right thing. They need to know we are watching, are unhappy, and willing to do something.
 
Nielk

Nielk

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Sources have told me that after making some calls, it looks like it was Nath who initiated the idea to have a lecture about the history of ME/CFS. The NINR coordinated the arrangements - inviting Shorter. Guess who the officer of NINR is? Walitt !!!
 
viggster

viggster

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jadam914 said:
Shouldn't it? If we are up there butts all the time about this kind of stupidity maybe they will be worried about making sure they are doing the right thing. They need to know we are watching, are unhappy, and willing to do something.
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I generally agree we should call out dumb moves, but the problem here is we don't know who "they" is. 20,000 people work at NIH, and from what I can tell, no one in our community knows who invited Shorter. If anyone finds out, I hope they share with everyone.
 
Wildcat

Wildcat

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"from what I can tell, no one in our community knows who invited Shorter. If anyone finds out, I hope they share with everyone."


They just have.
.
 
Nielk

Nielk

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Hope123

Hope123

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1,266
Forbin said:
@viggster
Would it be usual procedure for some kind of recording to be made at an NIH appearance such as this, be it video, audio or a written transcript? If he's going to speak, I think it would be important that we get to hear exactly what he says.
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YES.....I have asked for that in a letter and others can also do the same.
 
dreampop

dreampop

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296
Wow, hadn't seen that Walitt paper. So, he 100% thinks Fibromyalgia is a temporal conversion disorder. There can be no doubt that he thinks that for CFS too now, and, no doubt his inviting Shorter was not as innocent as some of us had hoped. Damn, so he thinks we all have conversion disorder and marshaled together to make CFS a real illness and therefore will never understand that we're just in denial and biased against psychology. It looks like he's even arguing against CFS rights/funding of these disorders, right? Because that would give them legitimacy they don't deserve and therefore they shouldn't be researched and lead to the misinformed belief that they are biologic.

So, how can someone represent CFS at the NIH, if they authored a paper whose conclusions can only be seen as anti-CFS funding/research/disability?
 
SickNotTired

SickNotTired

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Look, deep down inside didn't we all know that NIH was never going to work on ME/CFS and was looking into fatigue and they were using us as an excuse to do so and pacified us at the same time.

And we already knew that having Walitt was a gross mistake. And now we know Nath lacks good judgement. And saying Nath lacks good judgment is the best we can say and hopefully not really in on producing a marker for fatigue and mental health.
 
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dreampop

dreampop

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296
Nielk said:
Email addresses
'brian.walitt@nih.gov'; 'avindra.nath@nih.gov'; 'walter.koroshetz@nih.gov'; 'vicky.whittemore@nih.gov'; 'francis.collins@nih.gov'
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I don't think you should post e-mail addresses in a thread like this. People are finding stuff out and you want to give people time to come up with a rational response rather than click a link a spam a nasty e-mail - exactly the kind of negative imagine of us that gets perpetuated.

Its not clear what the best response is, but individual e-mails are rarely effective game changers.
 
Hope123

Hope123

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1,266
@viggster, I am hardly on this forum anymore being pre-occupied with other things so I am not familiar with newer people. I'm not sure how steeped you are in the history and politics of this illness -- I've been involved for over a decade and have the perspective of looking at it from the viewpoints of patient, clinician, and scientist. If you have not read David Tuller's articles or Hilary Johnson's book Osler's Web, I would encourage you to do so as they explain why patients are upset and frustrated (and rightly so).

While I and other advocates applaud the positive actions NIH has taken and the allies we have within government, you have to realize that almost every single positive action was carried out was partly because of advocacy by many, many people across the US, world, over years and decades. Governmental agencies did not just take actions of their own accord. You and others don't necessarily know of every action because some of us prefer to work quietly and as insiders while others work more publicly and on the outside. Both types of actions are needed to effect social change, if you read history.

I would also remind people that this is not the first time NIH invited someone with outdated/ biased information to give a talk to their staff about ME/CFS. Read about Dr. Fred Gill back in 2011. Advocates and others also protested then but it appears NIH still has not learned their lesson.

Also, for educational purposes, the great majority of advocates are reasonable people and appreciative of those who take the time genuinely to listen to concerns. For example, when the FDA hosted their 2013 Drug Development Workshop, they invited many patients to take part and the public to listen in. Afterwards, they wrote a report and guidance for pharm companies. The FDA was pretty much unanimously praised for their efforts with the Workshop even as they admitted they were quite new and learning a lot about the illness.
 
Hope123

Hope123

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1,266
dreampop said:
I don't think you should post e-mail addresses in a thread like this. People are finding stuff out and you want to give people time to come up with a rational response rather than click a link a spam a nasty e-mail - exactly the kind of negative imagine of us that gets perpetuated.

Its not clear what the best response is, but individual e-mails are rarely effective game changers.
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And how do you know that? There are many instances in history when the right person writing at the right time with the right words DO CHANGE the course of history. Read about women's suffrage movement in the US and how one mother writing changed the vote of a Congressional member.

Also, those e-mails are all Google-able and as government workers on the public payroll, they have a responsibility to answer to US citizens and taxpayers. A relative who used to work on Capitol Hill advised me don't be intimidated about writing anyone in government.

While I may disagree with how some people choose to advocate, you will rarely see me trying to oppose how someone else advocates, especially if there is no true harm done. Anyone who works with the public (and I have) has to have a somewhat thick skin in terms of the feedback they may receive.
 
dreampop

dreampop

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Messages
296
Hope123 said:
And how do you know that? There are many instances in history when the right person writing at the right time with the right words DO CHANGE the course of history. Read about women's suffrage movement in the US and how one mother writing changed the vote of a Congressional member.

Also, those e-mails are all Google-able and as government workers on the public payroll, they have a responsibility to answer to US citizens and taxpayers. A relative who used to work on Capitol Hill advised me don't be intimidated about writing anyone in government.

While I may disagree with how some people choose to advocate, you will rarely see me trying to oppose how someone else advocates, especially if there is no true harm done. Anyone who works with the public (and I have) has to have a somewhat thick skin in terms of the feedback they may receive.
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Its a question about what is most effective and best in the long term. A harm to public image is harm, and the NIH has indicated they are sensitive to criticism. This is not similar to writing to congress, and low yield successes in the past are not a good argument for mass e-mail complaints. Yes, you can do it. Doesn't mean it is the optimal choice. Remember Nath and Walitt are still in charge of $1M CFS study. I'm not saying don't write an e-mail, but maybe don't post it in this thread.
 
Nielk

Nielk

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6,970
dreampop said:
Its a question about what is most effective and best in the long term. A harm to public image is harm, and the NIH has indicated they are sensitive to criticism. This is not similar to writing to congress, and low yield successes in the past are not a good argument for mass e-mail complaints. Yes, you can do it. Doesn't mean it is the optimal choice. Remember Nath and Walitt are still in charge of $1M CFS study. I'm not saying don't write an e-mail, but maybe don't post it in this thread.
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This is your opinion that it's not an optimal choice. I think everyone can make their own decision whether they want to write in or not. My opinion is that we, as citizens and taxpayers have a definite right to tell our government what our thoughts are and yes - to criticize when we see negative actions.

We are on our own. We have to look out and speak for ourselves. Walitt has no place on a study of ME and we have a right to state that. Shorter should not be giving lectures on ME history. Writing a letter does not mean that one is nasty. It is possible to write very effective polite letters. I also think that there is strength in numbers. I am not forcing anyone to write, i;m just providing the addresses which are public anyway.
 
Neunistiva

Neunistiva

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442
dreampop said:
It looks like he's even arguing against CFS rights/funding of these disorders, right?
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I have no idea why he was invited, but what worries me is that after the IOM report, P2P report, Dr. Gordon and Dr. Naviaux's PNAS metabolomics papers, the gut bacteria paper etc. there was really no excuse left for NIH not to increase ME/CFS funding.

Now they've found an excuse.
 
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