For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to discuss ideas and share best practices. It will also provide the infrastructure needed to undertake therapeutic and diagnostic clinical studies in Canada. In addition, this network will set the stage for future international collaborations. The IMHA continues to participate in ongoing discussions with the National Institutes of Health to synergize research activities in ME/CFS in Canada and the United States.”
The catalyst grant for ME/CFS offered $200,000 each year for three years. There was only one application for the grant, which was rejected: “The committee’s main concern with the 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,” said Margaret Palor, President of the ME/FM National Action Network.
This “embarrassment to the Canadian research review process” cited 27 references, the vast majority of which are from 2003 or earlier (21/27), and over half (14) are from the 1990s or earlier. Moreover, more modern references appear to have been chosen with near-surgical precision: a 2012 study debunking the connection between the XMRV virus and ME/CFS; a 2016 study on exercise; a paper produced by a 2016 working group; and the Wessley and Chalder study on mortality in ME/CFS, which contradicts all other mortality findings in stating that there is no significant increase in mortality in ME/CFS and, like much of the work presented by the psychogenic school, has been debunked for its small sample size and vastly inclusive diagnostic criteria.
It goes without saying that no one publishing anything in the public domain should lean so heavily on older studies: new research can invalidate older research, in the self-correcting process that is the cornerstone of scientific progress. For example, the 1988 acyclovir trial cited by the reviewers was conducted before the 1988 Holmes criteria were developed. Patients studied had, not the 1994 Fukuda definition of CFS or the more stringent CCC or ICC criteria, but ‘long-term fatigue’ as a symptom, coupled with a previous history of Epstein-Barr syndrome.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]”Their knowledge of ME/CFS is really on the cutting edge of 1988,” one patient commented.[/pullquote]
“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.”
The 2015 IOM, and NIH reports are not referenced. Neither is the recent AHRQ addendum.
The CIHR selected the anonymous review committee. It appears clear the review committee are supporters of the psychogenic model of ME, and it seems clear the CIHR supports the psychogenic model of ME.
The application notes “The disease is challenging because the etiology and pathophysiology are not well understood.”; however, there is no evidence that CFS is a disease…. There is evidence that suggests labels assigned to medically unexplained syndromes are an artifact of medical specialization.(3)
The author then goes on to add,
Harrower (21, 22) described the [ME] patient as being characterized by a “need to excite sympathy.” She attributes [this] to a premorbid personality structure… Blatt and Hecht (24) found that about 50 per cent of their group of 21 subjects demonstrated… patterns suggestive of an hysterical personality. The latter investigators believed that a differential diagnosis between [ME] and hysteria is a misleading one, as the hysterical personality structure is consistently associated with the disease itself.
Wait; no, I’m sorry. That’s from a 1961 paper on psychiatric manifestations in Parkinson’s and Multiple Sclerosis, with ‘MS’ replaced by ‘ME’. To be fair, the paper is a lot more objective than the authors of the grant refusal. Neurological illness is often placed in a psychological framework before its etiology is well-defined, and before there are advocates beating down doors, is what I’m saying.
Some additional excerpts (really) from the grant refusal document, however, bear a remarkable resemblance. ‘Personality-based medicine’ might as well be medicine via Sun Sign, but when you link it back to the HPA axis in the manner of psychosocial theorists everywhere, the veneer of credence is lent to the proceedings:
Psychosocial factors are strongly associated with the development of CFS. For example, Hatcher and House reported the results of a case control study that found patients with CFS were more likely to experience severe events and difficulties in the 3 months (odds ratio [OR] = 9, 95% confidence interval [CI] 3.2 to 25.1) and year (OR = 4.3, 95% CI 1.8 to 10.2) prior to onset of their illness than population controls.(6) Individuals with CFS have been found to rate themselves higher than controls on the ‘hard-driving’ and ‘many outside interests’ of the Bortner type A personality scale.(7) Individuals with CFS have also been found to adopt confrontational coping styles and to rate themselves highly on an ‘action proneness’ scale.(7,8) CFS has been found to be associated with a Defensive High Anxious coping style,(9) which may directly affect physical well-being through the hypothalamic-pituitary-adrenal (HPA) axis (10).
And finally, patients perpetuate CFS symptoms via psychological mechanisms:
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.
And
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.
My concern lies with the lack of details regarding what the applicants refer to as best care for CFS or what their educational program will involve, the very limited attention to the role of psychosocial factors in CFS, reliance on the Alberta CFS Guideline which appears to have serious methodologic limitations, and the apparent strong focus on unidentified physical pathology as causative of CFS.
Canadian activists will be working on replies to forward to Health Minister Dr. Jane Philpott: more on this soon. You can read the press release based on this decision by clicking here.
If you’re a US citizen, please consider contacting your Congressperson about solidifying support for NIH-funded research! There are instructions and every fact you’ll need at your fingertips. More info here.
What was the upshot? Learn about CIHR’s response to the matter here.
51 thoughts on “Canada: officials turn down grant app because CFS "isn't real"”
How is this coming from the same country that produced the very excellent Canadian Consensus Criteria? They completely ignored their own very good diagnostic criteria that was made specifically for research. Ugh!
I can only imagine this is the sort of terrible oversight that the Health Minister will want to see to immediately. It’s an outrage, but it’s also some of the worst, most half-er… careless? There we go. Some of the most careless and lackadaisical research that I’ve ever seen — possibly because the author assumes anyone of any intellect will automatically agree with him. Therefore, it’s not important which references he uses to make his point, or what leaps of logic he makes on the way there.
Indeed. Part of our problem is that Wessely/Oxford CFS is almost certainly not real and Fukuda CFS also.
But both Ramsay Myalgic Encephalomyelitis (ME) and the Holmes Chronic Fatigue Syndrome (CFS) were real and based on outbreaks which were studied and published on. The ICC, and to a less accurate extent (imo) the Canadian Consensus Criteria, were based on trying to better define this, real, entity.
It seems they are condemning everything in toto as false but that is bad reasoning, and morally dubious. If people take a real disease and then tack on fake constructs onto it, surely that is not the patients fault! And it doesn’t make the original disease unreal ( anymore than if psychiatrists claimed Gravity was just a fear of heights disorder).
Whether through lack of knowledge or worse these people are just perpetrating the invisibility, lack of scientific research, and lack of care patients with ME have to deal with.
Tldr: just because Oxford CFS and Fukada CFS are worthless constructs doesn’t mean there isn’t a real disease worthy of study.
I know that Fukuda CFS is not a distinct entity, but I do worry about what me and a few others have begun calling ‘the Fukuda leftovers’: those who don’t have psychosomatic disorders and aren’t depressed, but persist in having serious fatigue as well as other symptoms. The 60% of those who meet Fukuda and don’t meet CCC aren’t fakers or malingerers any more than you or I. There is something else going on.
I am very wary of the stance that there are ‘real’ patients and ‘false’ ones: just better research definitions, and poorer research definitions.
Jamie thanks for replying. I agree, there are no false patients but believe a lot of people who qualify for CFS under Fukuda might have another disease process going on: for example low thyroid, primary sleep disease, and chronic migraines all could presumably get a CFS diagnosis under the 1994 Fukuda Definition.
During the 2000s it was repeated over and over that the 1994 Fukuda selects a heterogenous population and some went further and said” CFS/ME (as you can guess most of the people who said this did not make the distinction between CFS and ME ) is a heterogeneous disorder itself.” I think this is more than can be deduced from having an overly broad definition in the first place (and many of the studies from the UK claims to use the Fukuda Defintion but then diluted it when you actually read the fulltext, for example using only the “6 months fatigue “not relieved by rest part–murky ethically too since more scientists will only read the abstracts than the full paper ).
My personal preference is that clinical medicine cast a bit of wide net in diagnosing something because there are all significant atypical cases who don’t meet the model of some entity but that research medicine should cast a narrower net to study the “model” cases and then use those results to help all of us. One example would be Ron Davis studying the most severe patients.
Another is that their might be phases in this disease: flu-like illness->early chronic->chronic->late chronic to give a made-up example (as far as I know this has not been much studied). These phases would likely present with some differences in symptoms.
In any case, I don’t want at all to start a true vs. false patient dicotomy, only state the need for good definitions and for us to stand up for them as much as we are able. Bad definitions have an effect of clouding the science until researchers could get frustrated and say: “there was nothing there to begin with.”
But to return to your point I was recently hospitalized and after a lot of tests the doctors essentially said: ” well you aren’t a classic case but this is what we think you have.” And they were right. So in clinical medicine sure cast a wider net so no one loses treatment (supportive right now, but hopefully better and curative later) which could help but in research try to use the “model” cases.
Thanks for responding. I don’t we are at all on opposite pages, but if there were a debate I would much rather it be on accurate vs. inaccurate and not true vs. false which inappropriately implies a moral judgement.
Jamie thanks for replying. I agree, there are no false patients but believe a lot of people who qualify for CFS under Fukuda might have another disease process going on: for example low thyroid, primary sleep disease, and chronic migraines all could presumably get a CFS diagnosis under the 1994 Fukuda Definition.
During the 2000s it was repeated over and over that the 1994 Fukuda selects a heterogenous population and some went further and said” CFS/ME (as you can guess most of the people who said this did not make the distinction between CFS and ME ) is a heterogeneous disorder itself.” I think this is more than can be deduced from having an overly broad definition in the first place (and many of the studies from the UK claims to use the Fukuda Definition but then diluted it when you actually read the fulltext, for example using only the “6 months fatigue “not relieved by rest part–murky ethically too since more scientists will only read the abstracts than the full paper ).
My personal preference is that clinical medicine cast a bit of wide net in diagnosing something because there are all significant atypical cases who don’t meet the model of some entity but that research medicine should cast a narrower net to study the “model” cases and then use those results to help all of us. One example would be Ron Davis studying the most severe patients.
Another is that their might be phases in this disease: flu-like illness->early chronic->chronic->late chronic to give a made-up example (as far as I know this has not been much studied). These phases would likely present with some differences in symptoms.
In any case, I don’t want at all to start a true vs. false patient dichotomy, only state the need for good definitions and for us to stand up for them as much as we are able. Bad definitions have an effect of clouding the science until researchers could get frustrated and say: “there was nothing there to begin with.”
But to return to your point I was recently hospitalized and after a lot of tests the doctors essentially said: ” well you aren’t a classic case but this is what we think you have.” And they were right. So in clinical medicine sure cast a wider net so no one loses treatment (supportive right now, but hopefully better and curative later) which could help but in research try to use the “model” cases.
In a case where the pathology and how it connects together to form the chronic disease is so little understood I think the best approach is to try to understand these mechanisms by using a homogenous sample of the “classic” cases and then work outwards. The sooner the pathology gets understood–the sooner we all win…
Thanks for responding. I don’t we are at all on opposite pages, but if there were a debate I would much rather it be on accurate vs. inaccurate and not true vs. false which inappropriately implies a moral judgement.
John, this is really amazing. Thank you, you couldn’t have summed it up better if you’d tried. 🙂
It does seem particularly recursive to insist on a really broad definition and then complain that the illness is too heterogeneous to study.
Canada did not produce the Canadian Consensus Criteria. Dr. Bruce Carruthers, in B.C., gathered together a number of experts from other countries who produced it at a meeting in B.C. If the meeting had been held in Peru, it would be called the Peru Consensus Criteria. I wish it had been held in Peru because people, naturally, think what you wrote, but the CCC has never been used in Canada, never. Neither has the ICC which Dr. Carruthers was involved in setting up with even more experts – again, held in Canada. B.C. is a beautiful province.:-)
That reply about the CCC was to Tammie. This one’s to Jaime S., in case I mess up again (cognitive impairment). “I can only imagine this is the sort of terrible oversight that the Health Minister will want to see to immediately.” I take it that you don’t live in Canada if that was a serious remark. The Health Minister?!! Not a chance. I broke out laughing, as would any Canadians with M.E. The attitude in that paper is pervasive throughout Canada. Trying to get through to governments (provincial and federal) and the medical profession about M.E. is an effort in futility, always has been. We’ve been neglected and ignored for over 3 decades and that hasn’t changed.
“I can only imagine this is the sort of terrible oversight that the Health Minister will want to see to immediately.”
So my mother was a teacher in the public school system in New York for years. Anytime a student would curse, she considered it her duty to act shocked. Not because she’d never heard a curse word before, or because she didn’t expect a teen to curse, but because that was what she saw as the appropriate response to inappropriate behavior.
TL;DR — IMO, we have to maintain our shock / outrage and not ever take it on board that this is just ‘the way things are’. We deserve better from our governments than research decades out of date and what seems to be a deliberate attempt to block progress.
-J
You have to be kidding me, right , after so Many new evidence that support that ME is a real disease, starting from the base of a weakened immune system, dysfunctional , every new findings around the world proving the huge cellular, metabolic, immune dysfunction, brain MRI
SOOOO IF ME IS NOT AN ILLNESS THEM, AIDS IS NOT AT ILLNESS, MS IS NOT AN ILLNESS, IRRITABLE BOWEL SYNDROME IS NOT AN ILLNESS, PEOPLE WITH HEADACHES SHOULD NOT BUY TYLENOL OR ADVIL BECAUSE IS PSYCHOLOGICAL ,MAYBE THEY SHOULD PUT THE RIGHT NAME SO IT LOOK LIKE AN ILLNESS!!!
THATS RIDICULOUS AFTER ALL NEW STUDIES CONFIRM THIS IS A CHRONIC ILLNESS AS CHRONIC AS AIDS AS MS, AFTER UNITED STATES PUBLIC ADMITTING AS A CHRONIC ILLNESS!!! FOR THEM TO SAY THAT IS AN ABERRATION!!!!
Broke up your text to make it easier to read, Mark, and removed all references to Godwin’s Law.
Actually, the authors DID say that irritable bowel syndrome is also imaginary, adding that no one can tell the difference between ME/CFS, IBS, or FM. In his mind, these are all psychosomatic disorders. Which I would argue is a delusion in and of itself.
“The IMHA continues to participate in ongoing discussions with the National Institutes of Health to synergize research activities in ME/CFS in Canada and the United States.”
This is a very interesting statement. People need to think about it very carefully. It suggests NIH is in agreement with IMHA policy, which is clearly a policy of no research, no testing, and no treatment.
It seems the difference between Canada and US is that the Canadians are following a strategy of “Up Yours!” while US is following a public relations strategy of pretending to want to help patients while stabbing us in the back, which they have been doing for the last 30 years.
I agree with Tammie. ME patients have had enough pseudoscience. Thanks for informing us, Jaime!
You’re very welcome, Darla!
Thank you, Jaime!!
Thank YOU for commenting!
Despite the fact the development of the Canadian Consensus Criteria (CCC), (http://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf), was led by Canadian physician, Bruce Carruthers, the Canadian government has never adopted this criteria. Early in the inception of the CCC, Health Canada wrote the terms of reference, and chose the expert medical panel to author this work. The Health Minister of the day even said the CCC is: ” a milestone in the fight against this complex and tragic condition.” ( from page iv, ME/CFS: A Clinical Case Definition and Guidelines for Medical Practitioners An Overview of the Canadian Consensus Document”: http://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf) Health Canada planned the Consensus Workshop, that was held on March 30, to April 1, 2001.
However, when this invaluable work was published in 2003, Health Canada did not disseminate the CCC to Canadian physicians. Somewhere in the process, the Canadian government rescinded its support. The CCC has never been officially adopted by the Canadian government. The CCC validates ME as a very serious, physical disease deserving of commensurate research funding, education for physicians etc. Without this ground breaking work, we are left with the misunderstandings, neglect and abuse of decades. The harm this egregious decision has caused for millions of ME sufferers is immeasureable.
I see. The way to conduct scientific research is to decide beforehand what it is, and then look for supporting evidence. Stands to reason to reject the grant application then…
Both myth and science move in mysterious ways
This is a reply to jimells. You got it! I like the “up yours!” Canada and the US have probably collaborated about ME for several decades. Canadians… not so nice after all, eh?
It’s concerning that Canada would say that when they are so close to NIH , and the united States ,that shows that the US and NIH are on the same page. Becouse to say that after NIH admitted they had neglected, and categorized ME as a devastating real disease.. Hmmm that’s very concerning.
I most agree with jimells
There is something desperately wrong here. The CIHR wanted to fund a ME/CFS network for translational research. The details are here: https://www.researchnet-recherchenet.ca/rnr16/vwOpprtntyDtls.do?prog=2402&view=currentOpps&org=CIHR&type=EXACT&resultCount=25&sort=program&all=1&masterList=true
The problem is with Reviewer 1. I am a biomedical researcher (and a ME patient) and have reviewed and received reviews for grants and have not seen anything like this. Reviewer 1 does not address the application (or specific review criteria) just his personal beliefs on ME/CFS using odd references to try to back them up. Reviewer 2 gives a typical review that addresses specific strengths and weaknesses of the application.
I cannot discuss the merits of the application without reading it, but it does seem appropriate for a grievance to be submitted to CIHR on the inappropriate review from Reviewer 1.
Agreed. As someone with a science and research background, regardless of its inflammatory nature, it’s also exceedingly poor research that demonstrates a level of bias that should preclude participation in or judgements of research proposals. I agree we can’t know the quality of the originally-submitted grant application, but that is not what Reviewer 1 addresses here.
I hate to believe this, but the more that I think about , the more that I’m convinced that all this goverments are covering up something that has to do with our ILLNES, there is no way that for 3-4 decades goverments so powerfull like, US,UK,CANADA,AUSTRALIA., with so many advances and technologies, don’t really see that this is a cronic disease, came on, it’s 3 decades of doctors, scientistic , Researchers , me experts, respected names like, Dr Montoya , Nancy Klimas, world Class viroligist, not just proposing but demostrading with hard evidences, All the immune disfuntion, imperements of all kinds, demostraring is a real illness ,everything is in black and white, i dont know How Many people agree with me, but I strongly believe that so much cover up, dismissal , so many years of controversy leaving a community of millions of people suffering so deep, commuting suicide, there is something big mayor that’s bihind our illness, I’m incline to believe the reason they have block and limit all resources and findings in our illness is becouse the pathogen that’s underlaying cause of ME/CFS, it is also the cause of so many other diseases, possibly autism ,MS, certain cancers, fibro, auto immune and neuro immune diseases… Possibly trigger to HIV progress to AIDS,cronicly ill mold, It’s so epidemic that they all deside to cover up becouse its out of control, I don’t think the problem is ME/CFS.. But the pathogen that cause it!!!! How Many people think like me????
Mark, the only thing we can safely conclude here is that Reviewer 1 is a biased twit.
I’d further hypothesize based on what I read here that perhaps he once published research — probably in the 1990s — that states that CFS is a psychosocial construct. If so, good chance he cited his own work in the references section.
The Occham’s razor of simple self-interest can explain most people’s actions: there doesn’t have to be someone cackling evilly in the background to make this sort of thing happen. Let’s stick to what we know for sure, or at least hypotheses based on evidence.
We know for sure that Fukuda and Straus intended to bury the illness. It’s in black and white on official NIH letterhead. [1] [2]
We also know for sure there are blatant conflicts of interest and a UK Parliamentary Group called for a proper investigation of these conflicts TEN YEARS AGO: [3]
“CFS/ME is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if CFS/ME remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies.”
“[There are] numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here.” [4]
We know for sure that U.S. private disability insurance benefits are terminated after two years for so-called mental illnesses.
We know for sure that Sir Simon Wessely has been associated with NIH at least since 1991, when he was a keynote speaker at a conference sponsored by NIAID & NIMH (parts of NIH).
What we still don’t know is who will start a class action lawsuit against the Wessely School, their insurance industry handlers, and various agencies that have caused immense suffering and death to people struck down by this terrible illness.
[1] http://www.cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html
[2] http://bit.ly/The_Burial_of_ME
[3] http://erythos.com/gibsonenquiry/Report.html
[4] https://en.wikipedia.org/wiki/Controversies_related_to_chronic_fatigue_syndrome#Political
Oops Jimells — I thought this was in response to the comment about the ‘Fukuda leftovers’!
No, I agree that there has been a definite lack of movement in government, and that it’s intentional, though I do still believe it is, as you say, out of a basic desire to spend less money.
I was referring to Mark’s statement that the same cause or pathogen was behind most of the major modern diseases, and that’s WHY the government is behaving in this way. I don’t see any evidence to support that. I think their desire to pay out to fewer ill people by denying their illness is enough motivation.
Jaime s, jimells,
Do you really believe there is no evidence of any connection btwn any of this diseases?? Really??? Do you really believe that?? Ok tell me or any body else tell me if I’m wrong correct me,1-) AIDS , Me, ALS, MS, GUILLAIN-BARRE,SCLERODERMA,FIBRO, AUTISM, AND OTHERS AUTO IMMUNE AND NEURO IMMNUNE DESORDERS, does anyone of this illness has to do with immune system been disfuntional and deficiency?? You even said in previous comments if your doctor didn’t knew better he would of believe you had HIV, base on your immune results,?? All of them immune is the Key but most of people dont have access to the kind of test and doctos that you and i saw, in fact alot of people didnt even knew that this illness are immune deficiency and dusfuntion they just believe what their doctors tell them your immune is attacking You healthy organs or tissue, but they didnt know they had a disfuntional Cd4-3-8, supressor cells, NK cells before that,2-) does anyone of this diseases have been associated with VIRUSES, ESPECIALLY HÉRPES VIRUSES ??? for example EBV? HHV-6, CMV,HSV-1,L?? I thing the answer is yes, All this hérpes virus is been associated with the progresión From HIV to AIDS, also related to MS, 3-)to most not to say All of this diseases, is there neurological Imparedments ? Brain lessions, neuropathy? 4-) cardiophathy 5-), adrenal glands? 6-)Constipation? Gut issues? 7-)Allergies to food? I thing most of them does .. All i mention in different ways and severity, but all of them do, 8-)do We see cáncers, lupus , etc develope at some point in some of this illness? Different type of cáncers but the Botton line is thesame disfuntional killer cells that allow Cancer to develope, most of this disease happen more in woman ( like HTLV-1,TSP/HAM. Here is the most COMUN ONE,,
All this cronic diseases beside AIDS,!!!! DONT HAVE A CAUSE!!!! It’s believe to be trigger by herpes. Viruses but not clear cause… Also the money part the not have to pay part play a roll , but we are the biggest promoters that just as its we are a bourden that cost billions to the economie, wouldn’t make sense that of they find a cause and treatment for this , lots of people will be able to work and to be productive and less dependable of the goverment etc??? With All do respect to You and every persons believe, but i think this is far beyond $$$$, i believe that is All this cronic modern diseaes dont have a cause and have so Many similarity, they Share thesame underlaying cause or strains From thesame pathogen. Base on this facts , the only difference is to what kind of trigger factors the person are exposed to and in what Point in their Life , or if the pathogen was adquire direct line like HTLV-1 are at higher rate of developing TSP / HAM or leukemia.. Or if it was adquire very early in life baby , or later and what was the final trigger factor. I know you and mother and sister have it, I have talk to many people around the world like you, many people in the family have different auto immune diseases , MS, ME, ALS,CANCERS.. Etc all the ones living in thesame hotspot were the epidemic happen are ill, the other brother sister uncles, with thesame genetic but we’re living far in other city didn’t develope… I thing we ask the world and doctors to look out of the box , but we have to… At some point we have been our owne enemy.
Mark,
As I said earlier, “it might be true, but I don’t believe there is enough evidence to support it.” Put plainly, I don’t have a ‘belief’ around this illness. I have hypotheses only. As I’ve stated before, knowing that illnesses impact the same system, even in a similar way, does not mean for certain that they are caused by the same thing: only that they have similar end-results. This would be like saying TB and pneumonia must be caused by the same pathogen because they are lung diseases that present with similar end-pictures.
We are going around in circles in this matter, and you have certainly had your say.
Many people do, Mark, especially people who have had M.E. for decades, know the history and have seen it happening year after year after year. It’s easy to blame one reviewer or one study when something is published which is so far off the mark but that’s missing the bigger picture of all of the reviewers and studies which have come out with psychobabble nonsense.
There were piles of excellent research papers in the 1990s which showed exactly the same physical abnormalities in people with M.E. as more recent researchers are finding now – hard evidence. Those papers are all on PubMed. Why were they ignored by the NIH?
Canada is merely a bit player. The NIH is the main player in all of this. Canada has simply been following along. The two countries are quite close, not only geographically. Nothing at all has been done in Canada regarding M.E., for decades. The pervasive attitude by all the governments throughout the years (despite petitions being presented in parliament – and ignored) and the medical profession has not changed. “Myalgic Encephalomyelitis? Never heard of it.” – and that’s as recent as last year by 20 different health professionals including doctors, nurses, technicians. For them all to have said that in 2015 was stunning but they were serious.
‘Nothing to see here, folks, move along.’, by so many countries, has worked for far too many years and it’s good to see people like you and jimells realizing that there is something deeper going on. There always has been. Of course there’s been a cover-up, it began in the 1980s. The NIH has been the leader in all of it.
“There were piles of excellent research papers in the 1990s which showed exactly the same physical abnormalities in people with M.E. as more recent researchers are finding now.”
Linda, I was surprised when I discovered this as well. Are there some resources you can link for others?
“‘Nothing to see here, folks, move along.’, by so many countries, has worked for far too many years and it’s good to see people like you and jimells realizing that there is something deeper going on. There always has been. Of course there’s been a cover-up, it began in the 1980s. The NIH has been the leader in all of it.”
I was referring to the theory that multiple modern illnesses are actually the same illness. While this may be the case, there’s no evidence I can see to support it.
Okay, Jaime, I see what you mean about multiple modern illnesses being the same illness. I don’t think I’ve seen evidence of that either.
I’m really pushing myself past my limit to be on here (I have Severe M.E.) so I’ll only post a couple of links. But if you’re on Twitter, Erica Verrillo @EricaVerrillo is the person posting them all. I think she’s up to 2004, now. She has a lot of tweets about writing and authors literary agents which have nothing to do with M.E. so you have to slide past those (unless you’re interested. 🙂 ) http://www.ncbi.nlm.nih.gov/pubmed/8985621
http://www.ncbi.nlm.nih.gov/pubmed/11118815
http://www.ncbi.nlm.nih.gov/pubmed/8724857
You’re right, Linda. These are studies that have been done again and again more recently. It’s miserable to see it repeated over and over. Maybe we could do a research push for meta-analyses. That would at least begin to connect these studies together in a chain. I know it’s not ‘exciting’ research but it’s also remarkably cheap research that you’d think would be in the best interests of everybody: let’s find out what we really know so far. I’d love to see a meta-analysis of HHV in CFS and ME patients, for example.
Thank you for connecting me to these. I consider myself pretty well-versed but I don’t tend to look at older articles; I don’t think I’d seen any of these before.
-J
Hi Jaime s,
I never said is thesame illness , i said they maybe sharing thesame pathogen, same underlaying cause .. That depending on different trigger factors , time in like, way that was adquired, amount of Expousure either one virus or more than one , toxins.. Etc.. It can turn into different illness ,, defenetly their is a massive cover up the question is why all this NATO alliances,US,UK,CAN, AUST,.. Same ones that are know to be together on war and development of biológical wepons in the past, but lets not go there….
So weird. I could swear I was reading something from the U.K.!
Unfortunately. 🙁
I’ve always been proud to be Canadian, and with Justin Trudeau in place now I thought we were on our way to becoming even more inclusive and progressive. I didn’t even know how to respond to this when I first read it, it was a jaw-dropping kind of moment. I’m very sad to say that right now I am embarrassed to be Canadian when this is the kind of science that is supposed to represent our values through funding priorities in the health care system that we ALL pay for.
Shame on us Canada, for taking healthcare back so many years.
Pretty soon our government may start making statements about the earth being flat.
Everyone knows it’s flat, Jodie.
There are studies — reputable studies — that say it’s flat. Most of them are from a long time ago, but I’ve found a few researchers that agree with me from just this year. I find these newer studies to be very reputable.
In fact, there is no evidence that the earth is an actual planet at all, or indeed that planets exist, as such. There is evidence that suggest this label of ‘spherical’ is an artifact of specialization of the sciences in astronomy. It is well-known that the criteria for planets often overlaps with that of asteroids, planetoids, and even stars. Since they share some characteristics, it follows that neither asteroids nor planetoids nor stars actually exist. In any case, if they do, they are definitely all flat.
This insistence that there are giant, spherical bodies in the sky concerns me. My concern lies with the lack of detail regarding what is truly the best care for those who believe planets and asteroids actually exist, and furthermore, are spherical. I think we should focus more on the ancient wisdom of the flat earth.
Here are some citations so you can educate yourself on this matter.
They have to be covering this up, there is no other explanation , if de gona stick to what we know, this what We know, doctors and scientistc Researchers proving with hard evidence this is a cronic disease, there is hard evidence and they still playing around , why Canadá didnt use as examples all new findings ( that are not really new findings this been proven for Many years, but lets call it new studies ) From Australia that clearly show the total immune disfuntion of ME, OR the retusimax , or Dr montoyas or klimas … Why use something that was already recognized by NIH to be wrong and neglected???? … The concerning part is that NIH, Canada and UK, they always been together on this.. And for Canada to assume that careless position regardless of what NIH said last year About our disease, they have to be crazy. NIH little sooo little action one year after the said will used all their power to crack this cronic inllness, their actitud to still limiting grants, and now this with Canada .. Smell bad… They all been partners in crim all this decades
Obviously I was unclear, because three people have now told me that there is definitely evidence that governments have been attempting to direct ME research into unsavory and/or dead-end corners for years.
I was referring to the idea that many modern illnesses are actually the same illness or have the same single cause. I just don’t see the evidence for a cover-up in THAT manner, Mark.
And I have trouble with the idea of a ‘cover up’ about ME when every poor decision they’re making is out there for everyone to see. They’re screwing us over, and they’re doing it in public, only most people are averting their eyes or walking away.
Britain, Canada and Australia governments with its 80’s attitude toward the disease cannot be trusted with ME/CFS . They are under “the crown” and follow Wessely and his cronies dutifully.
We have big problems here in the US but the UK’s staggeringly ignorant views and its reach with countries under “the crown” is a really BIG problem.
Each time I saw something from Co-Cure mentioning the great work done in Canada, I had to refrain myself from falling over in my chair. At this point in time, past 65 years of age, I’m just considered old and no longer disabled although I fought for some years for disability from the time I was 50. But of course, I don’t live in the ROC (rest of Canada), but in Québec and articles and information about ME/CFS/whatever is close to nil. Of all the people “met” through illness, only one has had some follow-up in the long run from a microbiologist who has been interested in the subject, but he should be retiring any time now. Anyone to take over? Nawwwwwwwwwwwwwwwww. Canadians are not better served by the medical world than elsewhere!
Thanks for this break down!
Not sure if this is making the rounds at all, but anyone can contact Alain Beauden, president of the CIHR, “If you have any comments or questions about CIHR and/or health research in Canada”: [email protected] (http://www.cihr-irsc.gc.ca/e/7249.html)
Telephone : 613-954-1808 — Fax : 613-948-7227
Executive Assistant: Micheline Prézeau — Telephone : 613-954-1974
It’s interesting to note how poorly the CIHR is living up to its mandate (http://www.cihr-irsc.gc.ca/e/7263.html) with regard to this grant denial.
“CIHR’s mandate is to ‘excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system.’
“CIHR was designed to respond to the evolving needs for health research and seeks to transform health research in Canada by:
– funding both investigator-initiated research as well as research on targeted priority areas;
– building research capacity in under-developed areas and training the next generation of health researchers; and
– focusing on knowledge translation that facilitates the application of the results of research and their transformation into new policies, practices, procedures, products and services.”
I think there is an effort to link this to the Canadian #MillionsMissing for sure. To help out, check out millionsmissing.meaction.net and scroll down for the protest cities — you’ll find who’s in charge of Canada’s event. They would probably be the best person to chat with about coordination.
This report would be highly amusing (if it didn’t have such serious implications). It’s like they picked a Canadian Basil Fawlty to write the grant review.
Canadians – it’s time to break your chains with the imperial masters over the pond (at QMUL and KCL). British research into ME/CFS is stuck in the dark ages – you don’t have to follow along. You can do a lot better than this.
Wrong country. Canada isn’t following the UK. It’s the U.S. NIH which has been running the show here, as well as in the U.S., and it still is. That’s been the case all along. It’s the NIH which came up with the despicable term ‘Chronic Fatigue Syndrome’ and has kept us ill and dying for over 3 decades.
As a Canadian resident and a ME/CFS sufferer this sadly doesn’t surprise me at all. As a past hospital worker I know first hand that the majority of physicians here know very little about this illness and most have never heard of the Canadian Consensus Criteria. A lot of physicians, especially the older ones, believe the illness to be psychosomatic.
When I became ill over ten years ago I had to educate myself and then my doctor and have struggled to find good medical care ever since. I have learnt to not mention having ME/CFS now to most doctors since they don’t understand what it means, or worse, treat me like a hysterical hypochondriac.
“Chronic fatigue” is a symptom. I do genetic research, and there are literally hundreds of ways to get there. Trying to lump into a syndrome may validate patients’ very real fatigue as a disease with a tidy name, but is wholly incorrect in etiology and consequent treatment. Unfortunately we are still a long way off in practical application of genome problem solving. And sadly many of these posts support the idea that personality disorders drive CFS. I don’t believe this. But it does make wonder if there is a subtype that drives mental state.
Chronic fatigue is a symptom. We are discussing instead the syndrome ME/CFS. You are correct to say that there are many different ways to get to the symptom of fatigue; however, by conflating a single symptom with the syndrome, you are comparing apples to oranges, to say the least. Fatigue isn’t even the cardinal, much less the only symptom of ME/CFS: that is PEM, or a worsening of all symptoms post-exertion.
You discuss ‘trying’ to lump multiple symptoms into the syndrome description when that has already been done by researchers and clinicians into diagnostic criteria; this is not a fruitless pursuit as you appear to imply, but something that has been complete and utilized to diagnose patients and identify them for research purposes for years. While the oft-cited Fukuda criteria is very loose and may catch other disorders, the ME/CFS diagnostic criteria called the Canadian Consensus Criteria describes a very specific disorder with a specific cluster of symptoms; and more and more researchers are using it to identify patients in their studies.
Stating that patients’ anger and frustration must be due to a psychiatric pathology shows a profound lack of understanding of the events that have led us here, and what might have led to that anger and frustration. It’s noting that people are upset, having no context for that upset, and blithely labeling that upset as pathological.
Finally, identifying yourself as a geneticist when some of the most prominent geneticists in the U.S. are studying the disease, (and not ‘chronic fatigue’ the symptom) shows ignorance of the work being done in your own field. You cannot label yourself an expert in this manner, especially when your argument displays an ignorance of even the definition of the disease. You can’t make a reasonable argument without a grounding in the facts.
This is in reply to Liz, a geneticist, who commented on this post, August 17, 2017.
Further to Jaime’s comments, you may wish to check out the overview for the Canadian Consensus Criteria for ME; ” A Clinical Case Definition and Guidelines for Medical Practitioners”, which was published in 2005, following the main document publication in 2003; The “Myaglic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols”. Twelve international ME experts, who had diagnosed and treated more than 20,000 persons with ME authored the consensus criteria.This is the link to the overview:
http://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf
You might also want to check out the Open Medicine Foundation, whose research members include Dr. Ron Davis, world renowned geneticist, and 3 Nobel laureates; all working to solve myalgic encephalomyelitis: https://www/omf.ngo/
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