Q & A with Scott Carlson of Chronic Fatigue Initiative, at CFS Central

[Mindy Kitei]

Scott Carlson, the executive director of the newly launched Chronic Fatigue Initiativewhich has already pledged $10 million to get to the bottom of ME/CFSagreed to an email interview with CFS Central.

Mindy Kitei
CFS Central
http://www.cfscentral.com

 

[WillowJ]

Thanks, Mindy.

Very good questions, as always.

Some of their answers were a bit vague, but I liked some of what they had to say, especially this:

we believe the illness to be a diseasefar beyond a syndrome

 

[Nielk]

Yes, I agree that Mindy did a great job with her pointed questions.
Besides the answer hi lighted by Willow, the answers were pretty rote and unimpressive.

 

[shannah]

Couldn't post a comment on your page for some reason so will do it here.

"Well done Mindy!

They're sure not in any hurry though are they. Organizational efforts have been going on for 18 months with another 12 to come. That's 2 1/2 years! No doubt we'll lose many more of our sickest."

 

[Sing]

We have a good definition to study the correct people now, the (updated) CCC, I wish that the research would stop focussing so much on finding The Cause, as they may never find it, or it may be a number of causes, and instead shift energetically to understanding the dynamics and parameters of this illness. There are a number of diseases which still have unknown first causes, yet the dynamics of them are known and treatments are known. Of course we'd ideally like to know The Cause, or Causes, but meanwhile years are passing and patients are being denied and inadequately, incorrectly, treated.

How does this disease work; what does it affect; how can it be ameliorated or treated? Science can progress along these lines, and at some point, The Cause or Causes will emerge. But even then, knowing The Cause or Causes may not provide all the necessary indications for treatment and prevention.

Essentials first, and in this case, I feel strongly that How It Works and How To Treat It come first.

 

[Nielk]

Chronic Fatigue Initiative:

Does the name say it all?

 

[justinreilly]

posted a couple of comments. In one I demanded that "CFI" change it's name to one that doesn't harm patients, such as MEI. They imply they are not open to speaking with patients about this issue. The explanation that they dropped 'syndrome' from "CFS" because they think it's a disease, not a syndrome, makes absolutely no sense and is totally incredible.

here's my other post.

Thank you so much for addressing the concerns of the patient community to Mr. Carlson!! This is extremely important.

I am very thankful that the Hutchins family is going to be spending millions of it's own money on ME research.

However, I am very disappointed in the evasion of critical questions such as will Mr. Carlson be willing to speak to patients about the name "CFI" and when will the misinformation from and links to anti-ME-science websites like CDC's be dropped.

I am also disappointed that Mr. Carlson apparently didn't review his 'interview' responses written by a staffer, as evidenced by the phrase pointed out by Liz Willow, "The Hutchins family approached Scott Carlson..."

CFI says it will use CCC and 'the updated CDC definition.' I hope that does not mean the Reeves "empirical" criteria!

"Chronic Fatigue Initiative: The CFI-sponsored cohort recruitment protocol uses the updated CDC definition and the Canadian Consensus Criteria to identify well-characterized subjects. We also noted the new definition presented at the recent IACFSME conference."

 

[justinreilly]

Look gift horses in the mouth much?

Huge thanks to anyone who donates $10 million to legitimate ME research!

Like I said, I am very grateful to them for donating so much money to ME research.

However, I will look at this gift horses mouth until this untenable situation changes.

They say in the interview that when the science changes they will change the info on their site such as endorsements of CBT/GET and links to CDC. Obviously, they are implying that the science supports CBT/GET and CDC's other misinformation and that this should and will remain on their website unless and until the 'science changes.'

The use of "Chronic Fatigue" speaks volumes to me. Their proffered explanation that it is a disease, not a syndrome is beyond ludicrous. Can we agree on that? And if so, what does that tell us about "CFI"? I am really hoping this is all just gross negligence and ignorance rather than something intentional.

All this is completely unacceptable. An ME org can not call itself "Chronic Fatigue!" Even CAA would never even think of being that brazen! What does that tell you?

An ME org must never present CDC misinformation. To me this is "non-derogable." In international law, a norm is considered non-derogable if there can be no disagreement that it can't be violated. For example, international laws forbidding piracy, genocide and institutionalized rape are non-derogable; you can't say "yes, but in this instance it's ok because we're doing other great things."

An ME org can not be called the "Chronic Fatigue Initiative" or promote harmful CDC lies such as that GET is effective. This is non-derogable; non-negotiable!

To be clear, I am NOT urging an overall aggressive stance against the "CFI" org. But I think when someone does these very harmful things you have to make it crystal clear that it will not stand; even if it is said out of mere gross ignorance or negligence, not with the intent to hurt. Polite, but Firm for now.

 

[Andrew]

I wish that the research would stop focussing so much on finding The Cause, as they may never find it, or it may be a number of causes, and instead shift energetically to understanding the dynamics and parameters of this illness. There are a number of diseases which still have unknown first causes, yet the dynamics of them are known and treatments are known. Of course we'd ideally like to know The Cause, or Causes, but meanwhile years are passing and patients are being denied and inadequately, incorrectly, treated.

That's exactly what I was thinking as I read Mindy's interview. Which is why I like what the Light's are doing. OTOH, I wish the CFI the best of luck with their research. If Lipkin finds something, the dam will break that's holding back good research into CFS.

 

[heapsreal]

I think thats why they should run with the biomarkers they have like nk dysfunction etc and improve these parameters and treatments for them etc Even things like alpha wave intrusion in sleep dysfunction, improving sleep quality can go along way to improve immune function etc

 

[Sing]

As Andrew said, I'd be thrilled too if The Cause can be identified, but like him and heapsreal, I do think researchers ought to run after the biomarkers which either have already been identified in small projects or which are close to identification. HPA dysfunction, cytokine abnormalities, NK production, etc. Because we need them in order to establish tests to clearly identify people with this disease, then also for treatments. How many other diseases have unknown first causes, yet have been clearly identified by their effects, and treatments have been worked out--at least to improve outcomes?

 

[heapsreal]

As Andrew said, I'd be thrilled too if The Cause can be identified, but like him and heapsreal, I do think researchers ought to run after the biomarkers which either have already been identified in small projects or which are close to identification. HPA dysfunction, cytokine abnormalities, NK production, etc. Because we need them in order to establish tests to clearly identify people with this disease, then also for treatments. How many other diseases have unknown first causes, yet have been clearly identified by their effects, and treatments have been worked out--at least to improve outcomes?

Even these limited biomarkers would help distinguish the cfs/me from depression and maybe other illnesses and people that dont have them can then try and persue other diagnosis thats right for them instead of clinging onto and idea that they have a viral/retroviral/immune disorder and they can hopefully get the right help for their situation.

cheers!!!

 

[floydguy]

I think the possibility for treatments which could improve outcome are a big plus for some of these biomarkers. Established NK function (as in, even our PCPs believe in it) would give many, many more of us access to treatment that could both improve quality of life and slow damage done by secondary infections.

Biomarkers are critical for credibility, not just in our local PCP's office but in the research world as well. We need biomarkers.

I completely agree. It's critical for credibility as well as screening people for research. I think the problem is that CFS has become such a large tent of random misdiagnosed diseases people are afraid that some/many will be left behind. We will never get anywhere if an attempt isn't made to come up with tests that will definitively INCLUDE people into this disease.