NIH intramural research program update

[anciendaze]

This post is a follow-up to my previous one on FMD. I'm making it separate because it deals with a distinct research issue.

Logically, it is possible to do valid research on cohorts defined as described, where a diagnosis can be validated but not falsified, but the methodology will be quite different. You would collect data on a group defined to the best of your ability, which might include both FMD and misdiagnoses. You would then try to treat them until the FMD resolved. Some would respond and some would not. Those who do respond would then form a cohort with validated diagnoses, while those who did not would remain as putative diagnoses which have not been falsified.

This is one way to deal with this difficult research problem. Can anyone find evidence that this has been done by any previous researchers? Have they admitted to possible diagnostic error, or have they retreated into implicit claims of diagnostic infallibility because they are speaking ex cathedra as medical authorities?

 

[worldbackwards]

I looked through Hillary's Twitter feed and she never directs anything personally to you @viggster . The comment you mention was a general comment.

Hillary Johnson has spend ten years (at least) investigating and writing about the history of this disease and revealed the political corruption here in the government of the United States. The result;" OSler's Web" is an invaluable time to the community. She has been severely affected with ME now for many years.

To denigrate her name here because she made a generic comment you didn't like, is wrong.

She made nasty comments that were directly about him. If she didn't tag him in those posts, does it make it better that she was talking about him behind his back?

I have a lot of respect for the work that HJ has done, but surely if you have criticisms of someone, it is better to address them to that person, rather than bitching about them in public. As such, it's hardly difficult to understand why Brian would be annoyed by such behaviour. Would you like such behaviour to be directed towards you?

 

[anciendaze]

...Hillary Johnson has spend ten years (at least) investigating and writing about the history of this disease and revealed the political corruption here in the government of the United States. The result;" OSler's Web" is an invaluable time to the community. She has been severely affected with ME now for many years.

To denigrate her name here because she made a generic comment you didn't like, is wrong.

Will everyone please avoid personal attacks on Hillary and Viggster. Everyone afflicted with this illness is likely to be cranky and it is very easy to end up bashing each other instead of real culprits. I will be the first to agree that the disease and it's political context are divisive.

Osler's Web was published in 1996, so Hillary has been involved for well over 20 years. I recommend people read that to see the problems we face. Ignore as much of the he-said-she-said as you can and concentrate on those assertions which can be confirmed in existing records, like the paper by Stephen E. Straus which concluded the CFS patients had preexisting mental illness based on very poor evidence. Leonard Jason has remarked "I didn't think a paper that bad could get published." The book has lots of bibliographic references.

 

[Nielk]

She made nasty comments that were directly about him. If she didn't tag him in those posts, does it make it better that she was talking about him behind his back?

I have a lot of respect for the work that HJ has done, but surely if you have criticisms of someone, it is better to address them to that person, rather than bitching about them in public. As such, it's hardly difficult to understand why Brian would be annoyed by such behaviour. Would you like such behaviour to be directed towards you?

The good part about Twitter is that every tweet is public. Hillary never mentioned Brian's name in any of her tweets.

 

[Nielk]

Will everyone please avoid personal attacks on Hillary and Viggster. Everyone afflicted with this illness is likely to be cranky and it is very easy to end up bashing each other instead of real culprits. I will be the first to agree that the disease and it's political context are divisive.

Osler's Web was published in 1996, so Hillary has been involved for well over 20 years. I recommend people read that to see the problems we face. Ignore as much of the he-said-she-said as you can and concentrate on those assertions which can be confirmed in existing records, like the paper by Stephen E. Straus which concluded the CFS patients had preexisting mental illness based on very poor evidence. Leonard Jason has remarked "I didn't think a paper that bad could get published." The book has lots of bibliographic references.

It is Vastag who brought this accusation up here in this public forum. I am protecting Hillary's name since she is not a member here.

 

[ScottTriGuy]

Communicating via tweet (or any way that is not live and in person) is fraught with mis-understandings because we are not getting tone, body language, facial expressions, etc.

Accusations and judgments are rarely productive.

 

[worldbackwards]

The good part about Twitter is that every tweet is public. Hillary never mentioned Brian's name in any of her tweets.

Yes, but we all knew who she was talking about. The fact that she didn't accord him a right to reply when he acknowledged the tweets, and offered to have a conversation, makes a bit of a mockery of the idea that he can't mention elsewhere that she's had a go at him.

If she wanted to respond to Brian, she's had ample opportunity elsewhere that she didn't take. I don't see that he should be confined to a vow of silence just because you can play a kind of Twitter version of the 'not touching you' game with those tweets.

 

[Nielk]

Yes, but we all knew who she was talking about. The fact that she didn't accord him a right to reply when he acknowledged the tweets, and offered to have a conversation, makes a bit of a mockery of the idea that he can't mention elsewhere that she's had a go at him.

If she wanted to respond to Brian, she's had ample opportunity elsewhere that she didn't take. I don't see that he should be confined to a vow of silence just because you can play a kind of Twitter version of the 'not touching you' game with those tweets.

Brian did reply to her.

 

[worldbackwards]

Brian did reply to her.

Yes, so why shouldn't he refer to it here? And why shouldn't he take this...

https://twitter.com/i/web/status/660938654072872961

...as an attack on himself?

 

[BEG]

@viggser I spend a good bit of time (health permitting) on Twitter. The tone of your writing here is completely different from that of your tweets. On Twitter you are demanding that the advocate community accept the "generosity" of the NIH and play nice-nice with them. With some twitterers you respectfully agree to disagree. I suspect, however, that those to whom you give your respect is a short list indeed.

Plainly, it's difficult for you to empathize with the long-term patient who has lived through the ignoble history of this disease in the US. Also, empathy goes a long way toward understanding the other side. Maturity, too, helps one to look at all sides and realize that each side makes some very good points. With an open mind, the line you draw in the sand will be supple not fixed. That does not happen without an internal struggle as you weigh the options, which is not a simple task. The greater the stakes are, the greater the internal struggle should be. The older you get, the more you realize that nothing is black or white. One learns to take the best from everyone and go with it because wisdom can be found in the most unexpected places.

 

[LiveAgain]

I would prefer they raise the issue of the pseudoscience control groups. Without them, the FMD group have far less to work with. Wallit may become a sacrificial lamb, but the control groups and the other bps proponents will remain.

Yes, this concerns me so much too and I hope they address it. Even FND/FMD patients are skeptical of their own diagnosis! The issues raised in this series of posts mirrors our experience. The poor patient was diagnosed with M.E. and then sounds like diagnosis changed to FND. https://healthunlocked.com/fndhope/posts/131813112/im-new-and-sceptical

 

[Bob]

Hillary is entitled to express her opinions, but people are entitled to be offended by her comments and to defend themselves from perceived insults.
This tweet can easily be perceived to be offensive, along with the tweet posted three posts above.

https://twitter.com/i/web/status/702560572508917761

 

[Nielk]

Hillary is entitled to express her opinions, but people are entitled to be offended by her comments and to defend themselves from perceived insults.
This tweet can easily be perceived to be offensive, along with the tweet posted three posts above.

https://twitter.com/i/web/status/702560572508917761

There is no balance here on this forum. It is open game here to criticize those who want to act up and put more pressure on the government. It is fine to denigrate MEadvocacy for their stand, time and time again. MEadvocacy and I have been criticised here for sending the petition to stop Narth's presentation and the study as it stands today. I personally was attacked for remarking that the way the NIH is communicating in bits and pieces with individuals is wrong. No one expressed outrage at that. I was publically laughed at for my stand. I don't expect everyone to agree with me. Everyone is entitled to their opinion and what the best way to deal with the problem. But, if criticism is open here, it should go both ways.

Hillary and many others disagree with the way NIH has been communicating. It is not professional and it is most confusing. She and others have a right to express their views.

 

[BurnA]

The good part about Twitter is that every tweet is public. Hillary never mentioned Brian's name in any of her tweets.

I wonder who she is referencing in this tweet ?

https://twitter.com/i/web/status/659866959421546496

 

[Zombie_Lurker]

I am with everyone else on the subject of control groups. If they don't even know what the heck functional movement disorder is, how could they possibly contrast me/cfs with it?

 

[BurnA]

There is no balance here on this forum. It is open game here to criticize those who want to act up and put more pressure on the government. It is fine to denigrate MEadvocacy for their stand, time and time again. MEadvocacy and I have been criticised here for sending the petition to stop Narth's presentation and the study as it stands today. I personally was attacked for remarking that the way the NIH is communicating in bits and pieces with individuals is wrong. No one expressed outrage at that. I was publically laughed at for my stand. I don't expect everyone to agree with me. Everyone is entitled to their opinion and what the best way to deal with the problem. But, if criticism is open here, it should go both ways.

Hillary and many others disagree with the way NIH has been communicating. It is not professional and it is most confusing. She and others have a right to express their views.

Everyone has a right to express their views, i don't think anyone here is denying that.

I don't think anyone here has questioned Hillarys view and I am delighted that she advocates and the work she has done is immense.
I have found her attitude to @viggster on twitter strange though and I am perplexed and confused about this. For me they are both great advocates so to see one talk down to the other is divisive. Even if they have fundamental differences of opinion why not discuss and agree to take different paths ? There are many paths that will lead us in the right direction, but i don't see the value in denigrating someone who has chosen a different path.

 

[Nielk]

Everyone has a right to express their views, i don't think anyone here is denying that.

I don't think anyone here has questioned Hillarys view and I am delighted that she advocates and the work she has done is immense.
I have found her attitude to @viggster on twitter strange though and I am perplexed and confused about this. For me they are both great advocates so to see one talk down to the other is divisive. Even if they have fundamental differences of opinion why not discuss and agree to take different paths ? There are many paths that will lead us in the right direction, but i don't see the value in denigrating someone who has chosen a different path.

Can you accept the fact though that others don't share your view and are entitled to think differently. There are advocates out there who have been in this fight for decades. They have seen how corrupt the government actually is. They have witnessed that certain paths are counterproductive and at times more harmful than helpful. They don't share your view that all paths lead to the same direction. They have a right to their views and should not be denigrated for their views, just because it is not a popular one on this forum.

 

[BurnA]

Can you accept the fact though that others don't share your view and are entitled to think differently. There are advocates out there who have been in this fight for decades. They have seen how corrupt the government actually is. They have witnessed that certain paths are counterproductive and at times more harmful than helpful. They don't share your view that all paths lead to the same direction. They have a right to their views and should not be denigrated for their views, just because it is not a popular one on this forum.

Absolutely. But by the same token can you see this view :


All peace processes require a leap of faith at some stage. It takes courage on both sides to accept that.


I didn't say all paths lead to the same direction, i said many paths lead in the right direction. There is a huge difference. It is very important not to twist or indeed invent someones words. You have misrepresented my view.

PS All governments are corrupt, we will never change that.

 

[Denise]

@Nielk - even though we disagree on some things, I admire your strength and voice. (Edit to add - And you take a stand for what you believe and that is a good thing!)

As for the way NIH is communicating with "us" - I agree that the way NIH has handled this leaves a lot to be desired and I am sorry I did not weigh in on to support your view - I re-iterate my suggestion that NIH reinstate the ListServ as a way to let us know about things.
However - that has limitation as it does not make for 2-way communication because it doesn't give US a reliable way of communicating with NIH.

Discussion of multiple viewpoints helps me strengthen and possibly change my views.
I hope we can keep discussions open for differing views.

 

[Ecoclimber]

I suggest that everyone focus on the NIH study at hand and not ger caught up on side issues with regards to twitter. You will not fully understand the dynamics of what is taking place unless you understand the historical alignment of certain patients views and their groups. There is a lot of conversation and discussion taken place on Facebook that is spilling over into twitter world so the community is only getting bits and pieces of the dynamics that is occurring behind the scenes via Facebook and personal emails