The P2P Draft Systematic Review Is Up

[Dolphin]

Not to do with CBT, GET, etc. but I'm not sure why this study wasn't mentioned (it's not mentioned in the studies that were excluded either):

Neuropsychobiology. 1997;35(1):16-23.
Amantadine and L-carnitine treatment of Chronic Fatigue Syndrome.
Plioplys AV1, Plioplys S.
Author information

Abstract
Carnitine is essential for mitochondrial energy production. Disturbance in mitochondrial function may contribute to or cause the fatigue seen inChronic Fatigue Syndrome (CFS) patients. Previous investigations have reported decreased carnitine levels in CFS. Orally administered L-carnitine is an effective medicine in treating the fatigue seen in a number of chronic neurologic diseases. Amantadine is one of the most effective medicines for treating the fatigue seen in multiple sclerosis patients. Isolated reports suggest that it may also be effective in treating CFS patients. Formal investigations of the use of L-carnitine and amantadine for treating CFS have not been previously reported. We treated 30 CFS patients in a crossover design comparing L-carnitine and amantadine. Each medicine was given for 2 months, with a 2-week washout period between medicines. L-Carnitine or amantadine was alternately assigned as fist medicine. Amantadine was poorly tolerated by the CFS patients. Only 15 were able to complete 8 weeks of treatment, the others had to stop taking the medicine due to side effects. In those individuals who completed 8 weeks of treatment, there was no statistically significant difference in any of the clinical parameters that were followed. However, with L-carnitine we found statistically significant clinical improvement in 12 of the 18 studied parameters after 8 weeks of treatment. None of the clinical parameters showed any deterioration. The greatest improvement took place between 4 and 8 weeks of L-carnitine treatment. Only 1 patient was unable to complete 8 weeks of treatment due to diarrhea. L-Carnitine is a safe and very well tolerated medicine which improves the clinical status of CFS patients. In this study we also analyzed clinical and laboratory correlates of CFS symptomatology and improvement parameters.

PMID:

9018019

[PubMed - indexed for MEDLINE]

 

[caledonia]

@caledonia I didn't mean Obama per se but that in the future, it seems like it would take someone at the highest level of govt or their loved one to be stricken by the illness to actually take it seriously.

I know, but just throwing it out there. Could be someone in the President's cabinet. Or maybe a popular actor or something. Not that I would wish it on anybody.

 

[Freddy]

Exclusion Codes are clearly an expression of pure bureaucracy. We are fighting a war against a big machine.

Hi there,

maybe I missed something, but can anybody tell me why the Rituximab study is excluded due to inadequate duration (12 month follow-up) and the PACE trial (52 week follow-up) is not?

 

[shahida]

@jimells, I meant someone at the level of a US President or their spouse or child actually getting ME/CFS for anything to be done about it. I agree that anyone can mouth empty words during a political question & answer session and never follow through. But if someone at that level or their loved one actually got the disease, only then do I think something might get done. Not that I wish it on anyone, but I think that is what it will take.

ga
That is just so true. I've often thought if Prince Charles (for eg.)they'd be running round whispering into the ears of those with influence to do something-which would also change the political context. The vast anonymous masses however..that's another matter. But i'm surprised that there isn't such a person/s what with ME being fairly common.

 

[Nielk]

Hi there,

maybe I missed something, but can anybody tell me why the Rituximab study is excluded due to inadequate duration (12 month follow-up) and the PACE trial (52 week follow-up) is not?

That's a good question!

 

[Freddy]

That's a good question!

Hi,

is a non American (I'm German) allowed to comment in the P2P review?
I'm asking concerning the inconsistency (Rituximab trial excluded due to inadequate duration, PACEL trial included, both studies have the same follow-up time)...

Will anybody of you Americans comment. Or should we encourage somebody of the high potentials like professor Edwards to comment?

If we want to have an influence we should argue factually and at best with the help of prominent medical researches pointing out the obvious inconsistencies.

Greatings over the Atlantic...

 

[Nielk]

I don't think that commenting is limited to US citizens. Certainly the review has used international criteria and research.

In addition, the results could very well affect all patients globally.

 

[Esther12]

Hi there,

maybe I missed something, but can anybody tell me why the Rituximab study is excluded due to inadequate duration (12 month follow-up) and the PACE trial (52 week follow-up) is not?

This is something I was confused by, but it looked like maybe they were excluding studies because the treatment length was too short, rather than the follow up. That sounds crazy, but was what I thought on a first read. I've been extra ill recently, so haven't been able to look into this at all. Thanks to all those who are doing some digging for us.

 

[Esther12]

I'm pretty sure non-US citizens can comment.

 

[Freddy]

I don't think that commenting is limited to US citizens. Certainly the review has used international criteria and research.

In addition, the results could very well affect all patients globally.

Hi Nielk,

thanks for your reply! You are absolutely right, this could also affect patients in Germany.

I'm new in this forum, so do you think we should involve someone like Prof Edwards in the review?
Is there another blog, were the general reaction on the P2P is organized and medical proffesionals are
taking part?

I just want to give our comments on inconsistencies the weight it deserves, not beeing neglected...

 

[Nielk]

Welcome to the forum Freddy and it's nice to see that you have an interest in participating in advocacy. I don't know of any one place where all comments/protests are being organized.

It has been discussed HERE and HERE on Occupy CFS.
In addition, I believe a sample letter of protest of the P2P process is being drafted and will be made available shortly by advocates.

 

[beaker]

This is something I was confused by, but it looked like maybe they were excluding studies because the treatment length was too short, rather than the follow up. That sounds crazy, but was what I thought on a first read. I've been extra ill recently, so haven't been able to look into this at all. Thanks to all those who are doing some digging for us.

A little fuzzy, but I seem to remember only papers from certain countries were included. Maybe Norway was not on the included countries list ?

 

[catly]

A little fuzzy, but I seem to remember only papers from certain countries were included. Maybe Norway was not on the included countries list ?

I think any paper written or translated into English was considered. I think the Rituximab study was excluded because of what @Esther12 said above regarding the length of treatment. Which I'm not sure is a valid argument for Rituximab as I believe the protocol used was standard for other conditions, but I could be wrong.

 

[NK17]

I think any paper written or translated into English was considered. I think the Rituximab study was excluded because of what @Esther12 said above regarding the length of treatment. Which I'm not sure is a valid argument for Rituximab as I believe the protocol used was standard for other conditions, but I could be wrong.

I think we need @Jonathan Edwards opinion and knowledge on this.
Excluding the Mella's and Fluge's Rituximab study on PWME is pure folly!

 

[Dolphin]

Excluding any treatment that lasted fewer than 12 weeks (or whatever it is) would mean that surgical operations for example would be excluded.

Rituximab like operations are designed to have longer term effects.

 

[medfeb]

As Esther said, Rituxan was excluded because the drug was given for less than 12 weeks. Quite a few treatment trials were were similarly excluded even if the effect was expected to happen quickly or the treatment isn't typically given for 12 weeks.

Anyone can comment on this review and please do. This review will affect all of us. Comments are due by October 20. Thank you to everyone who does.

If Dr. Edwards is willing to comment, that would be great. This review will make it more difficult to get research going on the right track and will also affect today's medical care

 

[Kati]

So if the P2P was reviewing therapies for stomach ulcers, they would reject reviewing the paper on antibiotics use because the length of the therapy is way too short, and accept reviewing papers on stress reduction.

How is that for biased and likely having double standards?

 

[Nielk]

Jennie Spotila has just posted an "Evidence Review Comments Preview" - http://www.occupycfs.com/2014/10/15/evidence-review-comments-preview/

This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material we’ve gathered) as a framework for your own comments on the draft evidence review - due October 20th.

Please read the full post as it is well worth it.

 

[JalapenoLuv]

I shudder to think about the money spent on this, that could of been spent on research.
Shameful.

I can help with that. Shudder away.



Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

Table Published: March 7, 2014

Research/Disease Areas
(Dollars in millions and rounded)FY 2010Actual

(Non-ARRA)FY 2010Actual

(ARRA) 10/FY 2011ActualFY 2012ActualFY 2013ActualFY 2014EstimatedFY 2015Estimated

Basic Behavioral and Social Science
$1,163
$198
$1,173
$1,215
$1,172
$1,200
$1,200
Batten Disease
$5
$1
$4
$4
$5
$5
$5
Behavioral and Social Science
$3,526
$603
$3,573
$3,682
$3,535
$3,616
$3,616​

Chronic Fatigue Syndrome (ME/CFS)$6$0$6$5$5$5$5
Aging$2,517$443$2,572$2,593$2,429$2,494$2,494​

NIH spends 723 x the budget of CFS on mental health. I wonder what other diseases they are trying to minimize?

Also, why does CFS, a disease with an incidence estimated at up to 3,000 people per 100k have the same funding as Batten's disease, a genetic disorder with an incidence of 3 people per 100k? Using these figures the CFS budget should be around 5,000 million.

But the really interesting thing here is the amount of money they are spending on aging; a condition that isn't reimbursable by insurance companies. The only people who will benefit from research on aging are the rich. So the rich are using everyone else to fund their pet projects.

 

[catly]

I didn't see this posted. Cort did 2 posts on the AHRQ report, I found the 2nd one posted today very helpful.