Discouraging News for Canadian ME Patients

[Esther12]

Wow... this is genuinely the worst thing I've seen in ages. So bad it could be helpful?

the association between infection and development of CFS disappears when fatigue and psychological morbidity are adjusted for. 23

23. Wessely S, C.T., Hirsch S, Pawlikowska T, Wallace P, Wright DJ. Postinfectious fatigue: prospective cohort study in primary care. Lancet., 1995. 345(8961): p. 1333-8.

LOL at that reference for that claim.

The applicants advise that “the ME/FM Action Network is one of our primary partners.” A review of this organization’s site (http://www.mefmaction.com/) reveals a focus on conceptualizing CFS as a physical disease best managed by rest and activity limitation.

Regarding the evidence for optimal treatment of CFS, a 2016 Cochrane review has concluded: 23 “Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes. A positive effect with respect to sleep, physical function and self-perceived general health has been observed”.24

24. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2016 Feb 7;2:CD003200.

So Cochrane being used to discredit a patient organisation while they fail to correct their errors.

It is not clear why validating the Hexoskin (i.e. confirming that it is measuring what it says it measures) is important to the management of CFS patients, and I would be cautious of providing real-time feedback of all these measures to a population that is defined by unhelpful vigilance to physical symptoms and somatic attribution.

As we saw above, reviewer seems oblivious to the problems with current measures for CFS, and sees no benefit in developing a valid one. Seems there's a concern that accurate info could be harmful to CFS patients - not sure that concern should be affecting funding decisions for research.

 

[Esther12]

Anyone who describes PACE like this should not be involved in reviewing research proposals:

rigorously-conducted randomized controlled trial

The committee’s main concern with this application was that the focus on biomarkers (vs. psychosocial and non-biomarker influences) might produce information with limited value in terms of its impact on outcomes and care. The committee also would have valued more discussion about the literature, which has previously tried to explore many of the larger questions that the network is focusing on. In particular, describing how the previous literature helps or falls short in addressing important CFS issues would greatly strengthen the rationale for this proposal.

It certainly sounds like the committee needed to have its hands held on a walk through how the previous literature falls short.

 

[JaimeS]

So bad it could be helpful?

That's my impression. This comes across as the work of an out-of-touch research dinosaur, who hasn't read anything he didn't already agree with since 1995.

sees no benefit in developing a valid one.

I had a line in there initially that I deleted; something like "this is illogical nonsense, but if you believe CFS is nonsense, you wouldn't really care." Nothing said here lines up in the slightest unless you've already made up your mind that ME/CFS is a hysterical condition made up by whiners and malcontents -- and therefore further investigation plays into 'illness beliefs'. It's a regurgitation of the BPS clarion call to action: inaction. It's a waste! Doing tests will harm patients! Because as we all know, not having the testing you need will cause you to stop showing the signs and symptoms of ME/CFS. We can all vouch that if no one pays attention to the illness, it disappears.

...wait.

 

[sarah darwins]

This comes across as the work of an out-of-touch research dinosaur, who hasn't read anything he didn't already agree with since 1995.

Double-LOL !!!

 

[Sidereal]

Wow, this document is a sinister piece of garbage.

 

[sarah darwins]

Wow, this document is a sinister piece of garbage.

Yep, full of what Stephen Colbert memorably called 'truthiness', things that aren't facts but feel like they could be.

 

[JaimeS]

Yep, full of what Stephen Colbert memorably called 'truthiness', things that aren't facts but feel like they could be.

Yup. It's so clear when you look at the literature that this person seriously just recalled some older stuff on CFS and sought it out again. Then he searched the literature until he found new evidence that matched the narrative he agreed with back then. You can see it pretty clearly in the fact that there is no research cited from 2004-2010. One from 2011. The other three or four 'modern' pieces were all published this year.

This was written without any self-examination: just a quick weekend write-up, but it's a win for the psychogenics.

Doesn't that just sound like a hair band from the 80s?

-J

 

[sarah darwins]

I thought the prime example of truthiness here was that classic bps trick of the passive assertion:

psychosocial factors are strongly associated with the development of CFS

Er, no, they're not. But if you say it quickly it sounds like it could be true.

And yes, Simon and The Psychogenics ... they were so cool. Once. Dated badly, though.

 

[Snowdrop]

I'm working from memory here but I think that many of the people who make decisions at CIHR are from the Steven Harper era.
I don't know what to expect from the newish PM but Harper was/is anti-science. It's waaaaay over his head. Looks like he choose like minds.

 

[alex3619]

This started off as a news piece, but then I got more and more sarcastic until I had to say it was an opinion piece. Please promote and comment if you like it; opinion pieces end up way at the bottom of #MEAction's site:

http://www.meaction.net/2016/08/26/canada-officials-turn-down-grant-app-because-cfs-isnt-real/

Just posted to my FB account.

 

[JaimeS]

I don't know what to expect from the newish PM but Harper was/is anti-science. It's waaaaay over his head. Looks like he choose like minds.

I don't understand anti-science rhetoric, but it's thick in the air here in the good ol' U S of A. "I don't believe in facts. I go with my gut."

Just posted to my FB account.

TY alex!

 

[frog_in_the_fog]

“It probably took them several months to review the application because they had to spend a lot of time trying to get it to fit on a 5.25″ floppy disc,” commented one patient. “They were also probably having trouble finding a ribbon for their dot matrix printer. Their knowledge of ME/CFS is really on the cutting edge of 1988.”

You would think people of science would be more openminded, but they seem to think the direction of current research is a waste of time and resources.

You can't make a good omelette without breaking some eggs. These guys must really hate omelettes!

 

[AndyPR]

You would think people of science would be more openminded, but they seem to think the direction of current research is a waste of time and resources.

You can't make a good omelette without breaking some eggs. These guys must really hate omelettes!

Ahh, but they don't want to fall prey to false cooking beliefs obviously

 

[sarah darwins]

I don't understand anti-science rhetoric, but it's thick in the air here in the good ol' U S of A. "I don't believe in facts. I go with my gut."

Which Colbert has, of course, updated to 'Trumpiness' ...

 

[perrier]

It's beyond depressing.

Could we offer a trip to the IACFSME Conference to some influential person in Canadian health administration?

The health care system is broken in Canada.

 

[Sharon Van Isle]

My heart sank when I read the grant denial. We got knocked down so let's come back stronger.

President Obama made ME a priority. I think we have to go straight to the top to the Prime Minister on this one because the psycho-social bias still prevails with the Canadian Institute of Health Research.

There is a rapid funding request that can be brought forward to Parliament as they have done in the past for ebola etc.

The Liberal Party, on behalf of Prime Minister Justin Trudeau, sent me a request for my priorities for when the parliament resumes in a few weeks. I am attaching the email below. They ask for a donation after you send the request, but you don't have to. There is limited space for response. My response is also below and also plan to courier a hand written letter because sometimes these emails just go to Junk.

http://www.liberal.ca/building-a-be...&utm_campaign=20160825_JT_ParlPoll2&default=b

My Response: Medical rapid funding response for ME/CFS to negate the embarassing CIHR denial of the ME/CFS catalyst grant due to phycho-social bias. Recent discoveries show similarities to Parkinsons and MS. 400,000 Canadians are ignored and suffering.

 

[Forbin]

Citing u. Are you sure?

Sorry, but, after checking, it looks like I screwed up. It was actually this paper (also cited in the Canadian decision):

19. Gold D, Bowden R, Sixbey J, Riggs R, Katon WJ, Ashley R, Obrigewitch RM, Corey L. Chronic fatigue. A prospective clinical and virologic study. JAMA. 1990 Jul 4;264(1):48-53.
http://jama.jamanetwork.com/article.aspx?articleid=382402

...in which only six of the 26 patients met the Holmes criteria.

The patients in our study were enrolled from 1985 through 1987, before the formal criteria for "CF syndrome" were established in 1988. In retrospect, six of our patients fulfill the criteria of the Centers for Disease Control.

This was the famous JAMA study which found no differences in EBV titers between patients and controls but did find "higher frequency of DSM III depressive illness." This was widely misreported as showing that chronic fatigue syndrome was linked to depression, despite the fact that fewer than 1 in four of the patients in the study met the 1988 Holmes criteria. The improvement/recovery rates between the CFS patients during followup were reported as similar to patients not meeting the Holmes criteria (3 of 5; 1 apparently not followed up).

Sorry about the mistake. I think I've had this mixed up in my head for a while, possibly because of the similar time frame and similar size of the two studies.

 

[JaimeS]

Not at all, @Forbin -- we were putting together something hastily. Not to worry, though -- five seconds of searching has uncovered issues in what they DID cite.

It's still a completely comical study to use, since it only tested about 20 people, and tested people with a history of fatigue and titres showing they once had Epstien-Barr Syndrome. And we think Fukuda is terrible -- in this light, it was a marvel of modern research.

 

[halcyon]

Sorry about the mistake. I think I've had this mixed up in my head for a while, possibly because of the similar time frame and similar size of the two studies.

Still though it makes you wonder. The Straus trial took place between July 1984 and August 1986 according to the paper. According to Osler's Web, Holmes barely had developed a cursory case definition for CEBV by November of 1986. The paper claims that patients were considered for the trial if they met the published 1988 CDC criteria, but I just don't see how it was available in that form before the trial commenced. They would have had to go back and apply the case definition to patients after the trial had completed, or use their 1984 charts to retrospectively diagnose them using the 1988 criteria, neither of which seems very scientific to me. I feel like I'm missing something here.

 

[meadowlark]

I don't understand anti-science rhetoric, but it's thick in the air here in the good ol' U S of A. "I don't believe in facts. I go with my gut."

In Canada, Prime Minister Harper (voted out of office in Oct. 2015) forbade government scientists to speak about (or publish) their findings if those findings were inconvenient to the government agenda. Many government scientists were miserable during Harper's tenure and were jubilant when Trudeau took over.

That said, the scientists involved with this lousy decision are obviously not enlightened or in the least bit curious about the state of the research. Whether they were hired for that reason or not--who knows?

The link is a brief piece about Harper's muzzling of scientists: http://www.theglobeandmail.com/news/british-columbia/federal-scientists-eager-to-share-their-research-now-that-muzzles-are-off/article27171269/= =