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"By J. Burmeister: Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability

Snowdrop

Rebel without a biscuit
Messages
2,933
Just my opinion--but it looks like there are political reasons why they might not be able to pry Walitt loose from this study. Not unusual from a large institution.

So after two gatekeeper pre-selection groups whomever Walitt chooses after that shouldn't be a problem for the study since virtually all potential participants should by the second selection be viable candidates no?
Unless there is some concern for the people doing the pre screening. Making the third round choice seems to me moot.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I do not know, for sure, that there will any any issues at all by participation of people like Walitt. This is, as the article says, about risk. Not certainty.

The other issue, which I discussed elsewhere, goes to credibility. Its not just risk to us, but to NIH reputation with us.

The NIH study has incredible potential value ... or benefits. It also has risks.

As pointed out, and this happens with PACE for example, even if the authors acknowledge that the studies do not prove any psychiatric issues, and in particular causation, and may be about purely physical disease, how things are worded can be used by third parties to make very different interpretations and claims. That includes the insurance industry. Given the way that language is used in a highly distorted fashion with respect to PACE, its no wonder we are sensitive to similar language used by people in the NIH.

After thirty two years of highly political history involved in ME and CFS in the US, you would think that some in the NIH had a good idea as to how political these issues are. It appears not.

Keeping politics out of science is a good thing. However this means keeping political controversies away from the issue. Not entrenching them.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Just in case some folks aren't aware of the insurance industry connection:

http://phoenixrising.me/interviews-3/10317-2
Tom Hennessey said:
The big multinational insurance companies have literally billions of dollars invested in portraying us as mentally ill malingerers who are out to defraud them. Our corrupt congress has allowed big donors to write laws that say “if you are physically ill, they have to pay you disability until you are age 65! – but if you are declared MENTALLY ill, they can either deny your claim completely, or just pay you two years TOTAL, and then they can let you starve to death. Rosalynn Carter, President Jimmy Carter’s wife lobbied for parity between mental and physical illness from the early 1970’s. Ted Kennedy has lobbied for this as well and Hillary Clinton. We STILL don’t have it!

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.
 

duncan

Senior Member
Messages
2,240
"Everybody knows the dice are loaded
Everybody rolls with their fingers crossed
Everybody knows that the war is over
Everybody knows the good guys lost
Everybody knows the fight was fixed
The poor stay poor, the rich get rich"

(A nod to Leonard Cohen)
 
Messages
47
Just my opinion--but it looks like there are political reasons why they might not be able to pry Walitt loose from this study. Not unusual from a large institution.

So after two gatekeeper pre-selection groups whomever Walitt chooses after that shouldn't be a problem for the study since virtually all potential participants should by the second selection be viable candidates no?
Unless there is some concern for the people doing the pre screening. Making the third round choice seems to me moot.

Yes NIH made it sound like that, but it looks like they have with slick wording on multiple occasions tricked us into a false sense of security again.

The wording below makes us think that our experts will be involved (and they probably will submit some patients even most patients for the initial pool) but look at the wording and the experts they are talking about are Walitt Gill and Saligan who all have psychosomatic or CBT/Pace problems.

There are 6 of these guys in total as researched in a previous thread. Unger and the CDC will play a big role and using the Reeves list of questions seems to be back in play. Lipkin is not a clinician. So I don't feel like we have any for sure gatekeepers as of now. More like an introduction to the new NIH ME/CFS "Expert" clinicians for a new generation. If we don't get them out now I don'r think we ever will. Should be fun.

 

Seven7

Seven
Messages
3,444
Location
USA
1)Some things I think is try to look for monetary connection from the plp and insurance or any related companies
2) find a way to fool prove the candidates.
3) make sure we will analyze the data independently as a community if we do not agree w results. We will not acept crap laying down.
4) we need to infiltrate or find allies inside. Lol long shot but had to mention it.
 

Dolphin

Senior Member
Messages
17,567
I thought I would throw out another viewpoint.

There are hundreds of studies that have found physical abnormalities so I am not so concerned as some seem to be about a single noninterventional study.

I'm also concerned that too much opposition could affect momentum and interest from the NIH.

I think it's quite possible we could get quite a bit more e.g. $5 million more per year from the NIH going forward: over 10 years that would be $50 million - that is a huge amount of money relative to the amount of money that historically has been raised privately for the condition (although we have seen some substantial individual donations in recent years).

So I'm concerned that too much opposition about something like this could affect such momentum.
 
Messages
36
Looking at the list of people involved in the NIH study, Ian Lipkin should be a good antidote to the likes of Walitt.

Lipkin has said on numerous occasions, quite clearly, that he believes ME to be a biological disease, and not psychiatric.

Ian is definitely interested in finding biological answers. He spent $200,000 of his own personal savings on a ME research study looking for such biological answers. I think that speaks volumes about his commitment. Lots of researchers say they are really committed to finding answers about a disease, but their commitment usually stops short of spending heaps of their own money on it.

Maybe he personally doesn't see ME patients in clinical practice, but the patients he has studied in his research are patients of Dr Montoya, Klimas, Peterson, etc., so that kind of hints at what he thinks a genuine ME patient should look like. Hopefully that will carry over into this NIH study and he will use his influence to ensure the right patients are selected.

He holds a senior position in this study alongside Elizabeth Unger, so he does have influence, and I'll be really surprised if he doesn't use it in a good way.

I think it's important not to throw the baby out with the bath water. Whilst there are the serious Walitt-type problems I think it's important to recognize that people like Ian Lipkin really do "get it" and really are fighting for us. I'm not happy about certain aspects of this study but I'd be very worried if Lipkin wasn't involved. A strong, committed, experienced voice like his will mean the Walitt's don't have things all their own way. It will be interesting to see how things turn out.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
So I'm concerned that too much opposition about something like this could affect such momentum.
Risk does work both ways. We have risk in opposing or supporting the study.

Personally I am in overall support of the study, but aware of the pitfalls. I think we might need to comment on the report before its final release. I think we may need to comment on things from time to time. This does not mean we should oppose the study. Criticism is different from opposition.

Things improved a lot when functional movement disorder was removed as a comparison group.

As always we need to consider a change in direction when new information is available.

A lot depends on the skills and integrity of those doing the study. Even a flawed design, with some flawed expert opinions, can be OK if the rest of the researchers can deal with it. We saw that in the IOM report .. it was a flawed process, with serious limitations, but it kind of worked out well. People can compensate for flaws in the process.
 

Kati

Patient in training
Messages
5,497
I think patients expressing concerns in potential pittfalls and bias is a good thing. Patient voice needs to be included in order to yield the best possible results, and use of ressources.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I thought I would throw out another viewpoint.

There are hundreds of studies that have found physical abnormalities so I am not so concerned as some seem to be about a single noninterventional study.

I'm also concerned that too much opposition could affect momentum and interest from the NIH.

I think it's quite possible we could get quite a bit more e.g. $5 million more per year from the NIH going forward: over 10 years that would be $50 million - that is a huge amount of money relative to the amount of money that historically has been raised privately for the condition (although we have seen some substantial individual donations in recent years).

So I'm concerned that too much opposition about something like this could affect such momentum.

I agree. Those who are saying 'stop, don't do the study' could cause problems in the big picture. (Rather than saying 'we have deep concerns about Wallitt (or others) biasing the study')
 
Last edited:
Messages
15,786
Has anyone offered a good reason for Walitt's selection? From my point-of-view, he should be the last person involved in a study this important.
I think they may have tried to bring in everyone from the NIH that has ever published about CFS or even mentioned CFS in a publication. If so, this was obviously a bad way to recruit people, given their history in handling the disease.