A supportive view of Wallit from CortJohnson.org

[Justin30]

This interview of Tom Hennessey by Cort explains the situation quite clearly. It is just as timely today as when it was first published.

We face an uphill battle – these big insurance companies can not afford to pay us 55% of our former salaries for the next 40 years! THAT is why they are trying to get an internationally recognized neurological Disease Myalgic Encephalomyelitis, which has it’s own WHO code, to be thrown out. To the insurance industry, this is a life and death matter.



Just like everyone says the biggest medical cover up of the 20th century.....

Just absolutely boggles my mind reading this. As I lie in bed with blurred vision, numb hands, and twitching all over my body....

Thank you for providing the link, everyone on this forum should read it if they haven

 

[worldbackwards]

Curious...

https://twitter.com/i/web/status/702760276479836160

 

[TiredSam]

Curious...

https://twitter.com/i/web/status/702760276479836160

Hopefully he'll write something about why he thinks it's excellent, I'm not going to get it just by pondering

 

[TiredSam]

He's just had a bit of a spat with Angela Kennedy about it and blocked her. This is very weird.

 

[worldbackwards]

He's just had a bit of a spat with Angela Kennedy about it and blocked her. This is very weird.

For someone who likes shouting the odds, he's curiously intolerant of reasonably polite disagreement.

 

[sarah darwins]

Prof. Coyne does seem to have the odd brainstorm. I'm hoping this is one of them.

 

[A.B.]

I think Coyne is trying to moderate what he sees as overreaction from patients. Which I have to agree with, while also agreeing that concerns are justified.

We need better communication channels with the NIH to avoid misunderstandings.

PS: it's possible that our concerns are valid. It's also possible that they are exaggerated. We need to show some patience and restraint and wait until the communication situation improves.

 

[worldbackwards]

I think Coyne is trying to moderate what he sees as overreaction from patients. Which I have to agree with, while also agreeing that concerns are justified.

We need better communication channels with the NIH to avoid misunderstandings.

I largely agree, but I do think it would have been nice if he had made some attempt to engage properly rather than just blocking people.

 

[TiredSam]

I largely agree, but I do think it would have been nice if he had made some attempt to engage properly rather than just blocking people.

Indeed. Simply saying "read it again, you're divisive, you're blocked" isn't much of an argument, especially to the author of "Authors of Our Own Misfortune?". I'd be interested in his views on when an appropriate time for "patients" to react would be exactly ... when we're spoken to?

I put the word "patients" in inverted comments because of course many of us aren't patients. The word patient implies some kind of a relationship with a doctor, and some provision of medical care. Many of us not only have no reliable doctor or medical care, but spend our time actively avoiding the medical and support services, or keeping quiet about M.E. when we have to go in for something else. And this has been the situation for 30 years or more. Perhaps that's why we "overreact".

 

[beaker]

I think it's about time patients reacted. For too long apathy, or caring but no response. Advent of social media makes it easy to respond. That said, it certainly has good and bad points. I say more good than bad.
We have been too long in dark and too long left out of loop or disregarded. Time is to speak up.

We are w/o one main advocacy voice. We do not have communication w/ NIH set up. If we wait for that it may be too late. I hope the groups ( or at least a majority of them) can come together so we have a point group or a handful or point people to step up when things happen.

 

[Justin30]

I think it's about time patients reacted. For too long apathy, or caring but no response. Advent of social media makes it easy to respond. That said, it certainly has good and bad points. I say more good than bad.
We have been too long in dark and too long left out of loop or disregarded. Time is to speak up.

We are w/o one main advocacy voice. We do not have communication w/ NIH set up. If we wait for that it may be too late. I hope the groups ( or at least a majority of them) can come together so we have a point group or a handful or point people to step up when things happen.

I could not agree more and truly feel like something really needs to be stirred up....

 

[ScottTriGuy]

We need the carrot and the stick (to make this ass move ).

The folks with the collaboration carrot - and the folks the shame stick.

Pulling and pushing the NIH toward a quality study (and funding...and doctor education...and...)

 

[Ecoclimber]

I wouldn't contact him on this issue with NIH. To complex for psychologists. Best to leave alone and let him focus on PACETrial.

Need a biomedical research scientists to comment. Everyone running to him with our scrabble tons of patients is too much overload. He can't do anything anyway,just piss him off.

Cort piece took me off guard but told him wallit is biomedical reductionist. That Pt community & advocates orgs, sending feedback to right channels. Link to SOLVE CFS statement of concern

I will engage at another time. Cort has this Zen attraction to eastern philosophy why he relates so well with Wallit. They could gaze at their navel and hum. OMMMM

Surprise he blocked as he called out in debate for blocking his people

 

[alex3619]

it's possible that our concerns are valid. It's also possible that they are exaggerated.

I think its probably both. We are concerned about risk of bias, and its valid. I also think its not nearly certain there will be a problem. One thing that would help, a lot, is more public statements about where these researchers stand. What would help, a lot, is a public explanation of what they mean by psychosomatic and by functional movement disorders.

The language they use in these descriptions is what is called (in computer science) overloaded. That is it has multiple meanings, and can lead to unintended, or deliberately intended, miscommunication.

The word psychosomatic should be used very very carefully, as should the word functional. Neurology and neurological research should drop both terms entirely from the lexicon.

The thing about the politics though, is this: we have been under-reacting or not reacting for decades and we see where this got us. Finally we are getting our political voice. We might, and probably will, get it wrong, hyped or distorted at least some of the time. This can be sorted out by open communication in some cases. The worst outcome for us however is if we suppress our still too weak voice.

Playing nice has got us nowhere, decade after decade. We should look to cooperate with fair and open attempts to correct the issues. We should not expect all of us to be quiet, even if we get it wrong, and even moreso if we get it right but are criticized for it. We do need to keep an eye on the goal, but we need to see advances that we can trust too.

 

[Roy S]

Try googling "Cort Johnson EST Landmark Education"
I'm just guessing that he'd like to be on the patient advisory group for the NIH study.

 

[alex3619]

I know some things they say are just out of frustration with the situation.

People expect there to be answers. They expect medical authorities or some other guide can inform them ... but we are in Limbo, with no clear answers. We get confused and demoralized and intimidated ourselves. Others will have their own issues. Friends and relatives are at a loss as to how to help. Of course there is the other kind who play blame the patient, but this is only part of the problem.

So long as the science is in Limbo, and the average medico is listening to the voices they hear in Limbo, these issues will continue.

 

[TiredSam]

Cort has this Zen attraction to eastern philosophy why he relates so well with Wallit. They could gaze at their navel and hum. OMMMM

I suspected as much. I have decided to try an experiment in which I pepper my sentences with the word "buddhism" at regular intervals throughout the next 48 hours, just to see how long I maintain the philosophical and spiritual high ground from those around me. Hopefully no-one will find it too annoying, I'll report back ...

The thing about the politics though, is this: we have been under-reacting or not reacting for decades and we see where this got us. Finally we are getting our political voice. We might, and probably will, get it wrong, hyped or distorted at least some of the time. This can be sorted out by open communication in some cases. The worst outcome for us however is if we suppress our still too weak voice.

Amen. Sorry, I mean OMMMM

 

[BurnA]

He's just had a bit of a spat with Angela Kennedy about it and blocked her. This is very weird.

I largely agree, but I do think it would have been nice if he had made some attempt to engage properly rather than just blocking people.

Indeed. Simply saying "read it again, you're divisive, you're blocked"

Surprise he blocked as he called out in debate for blocking his people

Is it just me or where did he say she is blocked ? I can't find that.

 

[worldbackwards]

Is it just me or where did he say she is blocked ? I can't find that.

According to Kennedy, this occurred in a private exchange.

https://twitter.com/i/web/status/702768505498804224

 

[BurnA]

According to Kennedy, this occurred in a private exchange.

https://twitter.com/i/web/status/702768505498804224

So who blocked who ?