Discouraging News for Canadian ME Patients

[Groggy Doggy]

Sorry to worsen the party but CIHR awarded the following grant for a little less than 600,000$ for a rehab project.

Canadian MSK Rehab Research Network

Department: Physical Therapy

Program: Catalyst Grant: Musculoskeletal Rehab and ME/CFS Network Grant - MR

Competition(Year/Month): 201605

Assigned Peer Review Committee: CFS Catalyst Grant: Musculoskeletal Rehab and ME/Chronic Fatigue Syndrome

Primary Institute: Musculoskeletal Health and Arthritis

So PT is supposed to help ME patients, including wheelchair and bed bound? It just keeps getting more absurd. Its like Canada is offering a form of Boot Camp to cure ME (because patients are faking it and not trying hard enough)

 

[Kati]

This has nothing to do with ME...

Yeah, something is not quite right. It's supposed to be a grant for ME but they don't mention ME at all. Like basically we don't exist, they's just in the business of rehabing people.

 

[Kati]

It's beyond depressing.

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

There were 2of them (at least) from the Canadian Institutes, attending the last conference. Not sure if anybody going this year.

 

[Groggy Doggy]

It's beyond depressing.

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

Did you read the agenda? Unfortunately, at IACFSME they will learn about FM and GWI.

Here is one preso:
Behavioral Assessment and Treatment of ME/CFS and Fibromyalgia
Fred Friedberg, Ph.D.


,,,another
Session 3: Gulf War Illness
Session Co-chairs:
Kristy Lidie, Ph.D., US Department of Defense
Victor Kalisinsky, Ph.D., US Department of Veterans Affairs
Gulf War Illness Program Officers

Gulf war illness and chronic fatigue syndrome: lessons learned
Presenter: Lea Steele, Ph.D., Research professor, Baylor University Institute of Biomedical Studies

Brain Immune Interactions in Gulf War Illness: Cytokines and Cognition in US Military Veterans
Kimberly Sullivan, Ph.D., Boston University Medical Campus

Genomic approach to find mechanisms of Gulf War Illness pathobiology
Lubov Nathanson, Ph.D., Institute for Neuro Immune Medicine, Nova Southeastern University

Using gene expression signatures to identify novel treatment strategies in Gulf War Illness
Travis Craddock, Ph.D., Department of Psychology & Neuroscience, Nova Southeastern University

 

[GreyOwl]

Didn't the CCC Criteria come out of Canada? Why are they going backwards in time vs. forwards?

It's all about insurance. See below:

Abstract: Problems with bones, joints, muscles, and the nerves that help people move and interact with the world affect many Canadians. Problems like arthritis, osteoporosis, and injuries cause pain, lack of mobility, and interfere with work and other life activities. Disorders affecting the musculoskeletal system are the largest cause of disability in Canada. Rehabilitation is an approach to help optimize function throughout the lifespan and includes management of health conditions, and prevention of reoccurrences or future problems. To address the large burden of pain and disability, it is important to have a strong research base that can define the best approach to rehabilitation. The aging population and changing healthcare system place urgency on the need for rehabilitation researchers to work together to meet these challenges. This network will bring together researchers from different disciplines and people affected by these problems from across Canada to focus on fundamental problems of chronic pain, mobility limitations, and their impacts on work. The network will establish key research priorities, fund pilot grants and trainee awards that will help people work together on innovative solutions, create platforms so that researchers can share data nationally, and conduct studies at multiple centres. The network will look at innovative new ways to deliver rehab using technology and new discoveries. The research will consider the risk from injury or cumulative loads that occur throughout the lifespan. The research will engage experienced and junior researchers, patients, organizations, and trainees to work together collaboratively. The network is expected to provide a clear vision of what is needed and pilot projects addressing important research questions in a more collaborative way. Also, the network will attract larger funding and more extensive partnerships. The ultimate results will be high-quality research that will have an impact on the health of Canadians.

The problem this research addresses is money. How to create a research base which supports not financially supporting citizens or policy holders, which continues to remain ignorant of any connection between the neurological, endocrine and immune systems.

 

[Justin30]

Something needs to be written back.

 

[Kati]

It's all about insurance. See below:

The problem this research addresses is money. How to create a research base which supports not financially supporting citizens or policy holders, which continues to remain ignorant of any connection between the neurological, endocrine and immune systems.

Bang on, @GreyOwl, you're a wise one

Follow the money. It's pathetic.

 

[Gingergrrl]

Bang on, @GreyOwl, you're a wise one

Follow the money. It's pathetic.

Sadly I believe @GreyOwl is correct and it is all about the money just as it is in the US with the EpiPen. If there ever came a day that ME/CFS was a money making machine for Pharma, the situation would change very quickly.

 

[GreyOwl]

If there ever came a day that ME/CFS was a money making machine for Pharma, the situation would change very quickly.

I'm sorry that I'm so very cynical, but ME/CFS is a money-making machine. So are chronic pain and other "MUS". Rather than spending billions on research, corporate interests get to re-use existing drugs - anti-depressants (which may work in some because they alter receptor function, not because the patient has a mood disorder), cheaply roll-out some web based CBT apps (could the definition of medical "treatment" stoop any lower?) based on (essentially paid for) "research" like this AND then deny financial support based on "research" showing the complaint as psychological. The money-making is in the savings made.

 

[Gingergrrl]

@GreyOwl ITA with you that by denying it is a real illness and denying disability to ill patients and pushing anti-depressants that it is a money making machine for sure and you are not being cynical.

But what I was trying to say was if some day a drug like Ampligen became FDA approved solely for ME/CFS and they could charge thousands per infusion then it would become a "real" disease very fast.

 

[Kati]

I'm sorry that I'm so very cynical, but ME/CFS is a money-making machine. So are chronic pain and other "MUS". Rather than spending billions on research, corporate interests get to re-use existing drugs - anti-depressants (which may work in some because they alter receptor function, not because the patient has a mood disorder), cheaply roll-out some web based CBT apps (could the definition of medical "treatment" stoop any lower?) based on (essentially paid for) "research" like this AND then deny financial support based on "research" showing the complaint as psychological. The money-making is in the savings made.

It's not going to look good when PACE trial crumbles, and when researchers that know we are truly sick publish. I can't wait for that time.

For the Canadians wondering what they can do:
1) write to the health minister Jane Philpott
2) write to the minister of science.
3) get in contact with your MP. Prime him/her with the issues you are facing as a ME patient. Keep the contact every now and then.
4) get prepared to be vocal for the #MillionsMissing campaign. Recruit helpers. It is an excellent opportunity to get heard.

 

[AndyPandy]

Awful.

 

[Valentijn]

"Several months ago, the Canadian Institutes of Health Research offered a “catalyst grant” to set up a research network for ME/CFS.

But this grant should not be used to catalyze further understanding of ME/CFS, apparently. It can only be used to reinforce low-quality research, or produce completely unrelated research.

It provides interesting quotes like: 'there is no evidence that CFS is a disease', 'psychosocial factors are strongly associated with the development of CFS' and 'research focus on biomarkers is likely to provide limited additional value'."

Gosh, sounds like they already know everything! We don't need any research after all

The Nominated Principle Applicant (Alain Moreau) is an associate professor in the departments of dentistry and biochemistry at the University if Montreal. A PubMed search of “Alain Moreau AND chronic fatigue syndrome” reveals no citations.

And a pubmed search of those other 50 authors + CFS turns something up? Funny, seeing as even their proposal abstract doesn't mention ME, CFS, or even fatigue, FFS.

 

[Valentijn]

Quotes from the first reviewer:

... there is no evidence that CFS is a disease. Conditions such as CFS, fibromyalgia, multiple chemical sensitivity, irritable bowel syndrome, etc. are labeled on the basis of excluding known disease and as a group they have been designated as functional somatic syndromes or medically unexplained syndromes.1,2

There's plenty of evidence that ME/CFS is a disease. But that would require acknowledging your incredibly huge bias against such information, and then reading that information.

Psychosocial factors are strongly associated with the development of CFS.

This guy is so extreme he even denies the "bio" aspect. Here's a hint, genius: infectious triggers of ME/CFS have been identified in many large prospective trials. Even the quacks in Psychobabble Central (England) don't try to deny that anymore.

Vercoulen et al. have developed and validated a model to explain the perpetuation of CFS.12 Their model was able to account for the experience of fatigue amongst CFS sufferers through three factors: [1] focusing on bodily symptoms, [2] low physical activity, and [3] low sense of control. Patients with CFS are more likely than either depressed patients or normal controls to interpret symptoms (characteristic of CFS) in terms of physical illness, and least likely to interpret symptoms in terms of negative emotional states.13 Attributing symptoms to underlying physical pathology results in low levels of physical activity, which in turn amplifies fatigue severity.

"Developing a model" proves absolutely nothing. It's a flimsy hypothesis at best, though essentially unfalsifiable, hence not even in the realm of science. He seems to think that philosophy is an adequate way to invalidate all of the biological abnormalities found in ME patients.

The stated goals of the proposed network are reasonable (i.e. create a research network, standardize care, provide education to researchers and clinicians, and host an annual meeting to develop collaboration); however, the strong focus on undiscovered physical pathology and failure to acknowledge the substantial literature that has established psychosocial factors as both a cause and perpetuating factor for CFS is concerning. Failure to attend to psychiatric co-morbidity can be devastating; individuals labelled with CFS are at higher risk of suicide than matched controls without CFS (age-standardised and sex-standardised mortality ratio = 6·85, 95% CI 2·22-15·98).14

First of all, failing to take a ridiculously stupid and disproven belief into account is not a flaw, and it is not "concerning". Just because a quack (or anyone else) has a pet theory they favor does not mean that investigating other theories is inappropriate.

Secondly, there is nothing to suggest that suicide in ME/CFS patients results from untreated psychiatric problems. It results from untreated medical problems, such as intense chronic pain, inability to take care of oneself, etc, often combined with a lack of physical, medical, financial or social support.

The applicants advise that one focus of their educational strategy will be to “feature innovative diagnostic approaches”, but with no details of what such approaches would entail – an important detail given that CFS is a diagnosis of exclusion with no objective pathognomonic features.

And the winner of the "CFS" grant featured those details? By the way, pick up a frigging medical journal written in the past 10 years, and you'll find plenty of "objective pathognomic features", such as the 2-day CPET, cytokine signatures, Tilt-Table-Testing, and other medical procedures you apparently cannot understand.

There is no compelling evidence that any infectious agent is a cause of CFS 16-22 ....

This is just so blatantly and stupidly wrong. EBV has been repeatedly proven to trigger it. Q-fever, ross-river virsus, and probably others. All in prospective studies.

This question has now been informed by a rigorously-conducted randomized controlled trial of 641 CFS patients that were allocated to receive specialist medical care (SMC) alone or with adaptive pacing therapy (APT), CBT, or GET.26 This train found that, compared to SMC alone, the addition of CBT and GET produced improvements to physical functioning and fatigue and that pacing was ineffective.

Repeating "rigorously conducted" over and over does not make it so. The PACE trial was a piece of crap, and everyone with a brain who has bothered to even glance at the criticism knows it. Though I suspect this reviewer would think that patients getting worse while classified as "recovered" wouldn't be a problem, because he thinks we aren't sick in the first place.

... 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.12

And I think allowing this clown to have power over people is unhelpful in causing him to become nastier and nastier. This guy is just a blatant ME-denialist, on par with the HIV-denialists. He is someone who knows a lot about CFS psychobabble, and based on some of his denials of basic reality, it really does sound exactly like Shorter.

It is completely ridiculous that an ME-denialist was allowed to review ME/CFS grants. It's abusive, and intolerable.

 

[Hutan]

Yeah, what she said.

 

[Valentijn]

Reviewer #2 isn't as bad, probably just clueless and misinformed by certain people:

Wearable device research has the potential of providing insight into quality of life and additional factors that may be contributing to symptomatology and function ie., sleep quality, vital sign variability, activity

Lifestyle doesn't cause the symptoms. The disease causes the symptoms. The wearable devices can help in showing abnormalities and/or indicating when we need to alter our activities. If, for example, my heart rate goes up to 120 just from standing up and walking a few meters to the bathroom, I shouldn't try to take a shower or even cook dinner that day. And O2 saturation dropping under 93% when I try to sit up would be an indication that I need to lie down until I recover.

An evidence-based work-up protocol and treatment approach will help to ensure that warranted testing is obtained but potentially costly unwarranted testing be minimized.

Ah, right. Again, the primary focus is to minimize money spent by the taxpayer in discovering and treating medical problems, because the reviewer believes the problems are not biological. Instead of shelling out thousands for tests and treatments now, the taxpayers can shell out tens or hundreds of thousands when the patient is too disabled to work or care for himself or herself.

They have focused primarily on biomarker research which is one area but its impact on quality of life for persons with ME/CFS would be quite indirect and current research remains very unclear whether this will add any value to diagnosis or management of individuals with ME/CFS.

A biomarker would probably help with treatment, would certainly help with diagnosis, and would shut up the ME-denialists like the other reviewer. All of these things would most certainly improve the quality of life for ME/CFS patients, though it would undoubtedly have to be weighed against the increased misery to be endured by newly unemployed psychobabblers.

However, they have not described how the wearable vest might be specifically studied and whether data would be transmittable directly to researchers or be used as a feedback device for participants, the later of which may be detrimental.

Okay, the verdict is in: Reviewer #2 is also a psychobabbler. Since when is information detrimental? Only if you think patients are too stupid or crazy to understand it and use it in a rational manner.

 

[Valentijn]

Committee notes:

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.

They are very plainly stating that only plans incorporating psychosocial factors will be considered. Again, this is completely unacceptable.

This decision and the outrageous prejudices displayed in it should be fought. The committee and reviewers should not be involved in anything involving ME/CFS until they have adequately educated themselves about the subject matter.

If they really wanted more data and research links from the applicants, they should have asked for it, instead of relying on psychobabble from one side. There is absolutely no excuse for instead funding a project which does not involve ME/CFS at all.

 

[Justin30]

Can someone also link the Alberta ME/CFS work to this please.

 

[Justin30]

Also can someone please find and reference the

Codes and descriptions for:

ME

And

CFS

 

[alex3619]

And the winner of the "CFS" grant featured those details? By the way, pick up a frigging medical journal written in the past 10 years, and you'll find plenty of "objective pathognomic features", such as the 2-day CPET, cytokine signatures, Tilt-Table-Testing, and other medical procedures you apparently cannot understand.

1940 Tilt Table Test
1946 Quantitative EEG
1949 CPET
1954 Sleep Study

How out of date does a doctor have to be before we can consider them a dinosaur? These are obvious tests to run, the profession as a whole just ignored them, and mostly still is ignoring them.