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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Not much ME/CFS research is funded in Canada (as of March 2008)

Dolphin

Senior Member
Messages
17,567
Tomk, specifically she mentioned research on xmrv and cfs.
Not exactly sure what you are saying - that they would specifically like grant applications on XMRV and CFS? (I did read the first page, just not sure what your point is - I did make a few points that you could be replying to).
 

Kati

Patient in training
Messages
5,497
Very interesting Boomer, will check out the health research link later tonight
 

Dolphin

Senior Member
Messages
17,567
Research funded

Maybe somebody can do this in a fancier way but here are links to the four funded studies that come up when one searches for "chronic fatigue syndrome":

The total dollar amount for the specified search criteria is $694,080.
Your search returned 4 matches.
(Note: Chronic Fatigue Syndrome doesn't make the keyword section of the third one)

http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

Project Information
Project Title: Investigating the effectiveness of acupuncture versus conventional care for fatigue related to infectious mononucleosis
Period: from: 2007-05-01 to: 2010-04-30
Principal Investigator(s): ADAMS, Denise
Co-Investigators:
Supervisors: VOHRA, Sunita ; YASUI, Yutaka
Previous Investigators/Supervisors:
Institution: University of Alberta
Department: Public Health Sciences
Program: Frederick Banting and Charles Best Canada Graduate Scholarships - Doctoral Award
Assigned PRC: DRB
Primary Institute: Population and Public Health
Primary Theme: Clinical
Keywords: ACUPUNCTURE, ALTERNATIVE MEDICINE, CLINICAL EPIDEMIOLOGY, COMPLEMENTARY AND ALTERNATIVE MEDICINE, EPIDEMIOLOGIE, EPIDEMIOLOGY, MDECINE DOUCE, TRADITIONAL CHINESE MEDICINE
Abstract: Infectious mononucleosis (IM) is a ubiquitous viral illness that is most prevalent among adolescents and young adults. The most common signs and symptoms of IM include swollen glands, sore throat, fever/chills, body aches and fatigue. For most, IM is a self-limited illness of several weeks, however, for up to 22%, fatigue may last for one month or more. The public health burden of IM is most obvious in health care visits and days absent from work or school. Although IM can be readily diagnosed through a physical exam and simple blood tests, there is no cure. Current medical treatment for fatigue is limited to rest and medications of unproven effectiveness, resulting in some patients pursuing alternative medical therapies, including traditional Chinese medicine (TCM). Acupuncture is one of many therapies that developed within TCM. Anecdotal and historical evidence suggests that acupuncture may be effective in treating symptoms of acute IM, including fatigue. Clinical research in fatigued populations including fibromyalgia and chronic fatigue syndrome suggest that acupuncture may be effective in relieving symptoms of these conditions. Although the mechanism of action of acupuncture is still under investigation research suggests that acupuncture may have modulating effects on the immune system. In light of this preliminary evidence and the fact that clinical research of acupuncture treatment for IM has not yet been conducted, this project proposes to investigate the effectiveness and safety of acupuncture for the treatment of symptoms of IM, including fatigue. The proposed research project will include the design of a pragmatic randomized controlled clinical trial and testing of the trial design through a pilot study.

Funding Information
Fiscal Year Amount
2007-08 $32,500
2008-09 $35,000
2009-10 $35,000
Total: $102,500
---------------
http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

Project Title: Chronic fatigue syndrome and sleep disorder
Period: from: 2001-04-01 to: 2004-03-31
Principal Investigator(s): LIBMAN, Eva
Co-Investigators: BALTZAN, Marcel A ; FICHTEN, Catherine Susan ; KIRMAYER, Laurence J. ; SCHONDORF, Ronald
Supervisors:
Previous Investigators/Supervisors:
Institution: Jewish General Hospital (Montreal)
Department: Psychiatry
Program: Operating Grant
Assigned PRC: PSB
Primary Institute: Neurosciences, Mental Health and Addiction
Primary Theme: Clinical
Keywords: ASPECTS PSYCHOSOCIAUX/COMPORTEMENTS, CHRONIC FATIGUE SYNDROME, COGNITIVE-BEHAVIOURAL INSOMNIA TREATMENT, CPAP, HEALTH SERVICES, INSOMNIA, LES SERVICES DE SANT, MEDICATION, PSYCHOSOCIAL AND HEALTH BEHAVIOURS, PSYCHOSOCIAL/HEALTH BEHAVIOURAL RES., SANTE ET FACTEURS PSYCHOSOCIAUX, SLEEP DISORDER, SLEEP DISORDERS, TROUBLES DE SOMMEIL
Abstract:

Funding Information
Fiscal Year Amount
2001-02 $113,838
2002-03 $81,244
2003-04 $81,244
Total: $276,326
----------
http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

Project Title: Structure function analysis of dual function protein kinase-RNAse signaling proteins
Period: from: 2007-07-01 to: 2012-06-30
Principal Investigator(s): SICHERI, Frank
Co-Investigators:
Supervisors:
Previous Investigators/Supervisors:
Institution: Mount Sinai Hospital (Toronto)
Department: Samuel Lunenfeld Research Institute
Program: Operating Grant
Assigned PRC: BMA
Primary Institute: Genetics
Primary Theme: Biomedical
Keywords: BIOLOGIE CELLULAIRE, BIOPHYSICS, BIOPHYSIQUE, CANCER DE L'APPAREIL DIGESTIF, CELL BIOLOGY, CRYSTALLOGRAPHY X-RAY, GASTRO-INTESTINAL CANCER, LEUCEMIES, LEUKAEMIAS, PHOSPHOREGULATION, PROTEIN KINASE, RNASE, SIGNALING, SUBSTRATE RECOGNITION
Abstract: Ire1 and RNaseL are protein kinases with a unique ability to cleave RNA. The two proteins function in very different cellular processes owing in large part to differences in their ability to recognize and cleave messenger RNA targets. RNaseL plays a key role in inhibiting the ability of viruses to replicate in human cells while Ire1 plays a key role in allowing cells to adapt to the accumulation of toxic levels of unfolded proteins in the endoplasmic reticulum. RNaseL cleaves RNA non-specifically which allows it to degrade all cellular and viral RNAs in the cell in response to viral infection. In contrast, Ire1 recognizes one or two messenger RNAs amongst the thousands of different transcripts expressed in the cell. RNaseL and Ire1 play important roles in many human diseases. RNaseL is critical for the interferon-mediated antiviral response during West Nile virus, hepatitis C virus, and herpes simplex virus type 1 infections by limiting the accumulation of viral RNAs. In addition, mutation of the RNASEL gene correlates with an increased incidence of prostate and pancreatic cancers. The function of RNaseL is also perturbed in patients with chronic fatigue syndrome. Defective Ire1 function has been implicated in human diseases such as familial Alzheimer's disease, diabetes, bipolar disorder, colitis, and neuronal death following trauma. Ire1 function is also essential for the growth of certain tumors. While Ire1 and RNaseL share similarity within their protein sequences, no similarity is apparent with known enzymes that cleave RNA. In this proposal we aim to obtain a detailed understanding of atomic structure of Ire1 and RNaseL using x-ray crystallographic methods. Our underlying hope is that our studies will open new avenues for clinical intervention centered on IRE and RNaseL to treat disease.

Funding Information
Fiscal Year Amount
2007-08 $81,206
2008-09 $108,274
2009-10 $108,274
Total: $297,754
---------------
http://webapps.cihr-irsc.gc.ca/fund...version=CIHR&p_language=E&p_session_id=697734

Project Information
Project Title: Exercise tolerance in patients diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome.
Period: from: 2009-01-01 to: 2009-12-31
Principal Investigator(s): TAUB, Elana Cindy
Co-Investigators:
Supervisors: MACINTOSH, Brian Robert
Previous Investigators/Supervisors:
Institution: University of Calgary
Department:
Program: Frederick Banting and Charles Best Canada Graduate Scholarships - Master's Award
Assigned PRC: CGA
Primary Institute: Musculoskeletal Health and Arthritis
Primary Theme: Clinical
Keywords: ANAEROBIC THRESHOLD, ANS LE DOMAINE DE LA SANT, CENTRAL FATIGUE, CHRONIC FATIGUE, ELECTROMYOGRAPHY, FATIGUE CHRONIQUE, GRADED EXERCISE TEST, HEALTH, MAXIMAL OXYGEN CONSUMPTION, MUSCLE, BONE, OR JOINT, MUSCLES, OS OU ARTICULATIONS, PERIPHERAL FATIGUE, POST-EXERTIONAL MALAISE
Abstract: Not Applicable

Funding Information
Fiscal Year Amount
2008-09 $4,375
2009-10 $13,125
Total: $17,500
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
So a third ($276 326) of our CFS funding over ten years ($870 000) went to a single clinical psychiatric study!?!
Oooohhh! now I'm really mad.

BTW tomk, I only see two studies there, and one of them is for mono.
 

boomer

Senior Member
Messages
143
It is unbelieveable that this disease has been spreading over the past decades while every government turned their backs on this huge population.
 

Dolphin

Senior Member
Messages
17,567
BTW tomk, I only see two studies there, and one of them is for mono.
I put them up in stages - add one, save it, add another. Those are the four you get with "chronic fatigue syndrome". As you say, one is for mono. Third one doesn't look like it involves CFS patients. 4th one which is on CFS only got $17,500.

I'm not sure how they get up to $874,000. A few studies show up for "chronic fatigue" but they don't add up to the correct amount (none appear to involve CFS patients). Results for" CFS" aren't relevant (it's an abbreviation for other phrases). "Myalgic" just gives the fourth one above.
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
Actually, the last two seem reasonable.....especially the rnase l one. Although that one wasn't specifically CFS.

And I can't complain about the Accupuncture one either. Personally I think it's good to look into non pharmaceutical approaches.

So, overall, not too bad....but still a measly budget overall.

How did you do that search? I'd be curious to see how much money we have put into other diseases.
 

boomer

Senior Member
Messages
143
If you have a retrovirologist research center in your city in Canada, you may want to send them the letter. You may know an experienced cfs doctor in your city able to inform about good blood samples. It doesn't hurt to try.
 

Kati

Patient in training
Messages
5,497
If you have a retrovirologist research center in your city in Canada, you may want to send them the letter. You may know an experienced cfs doctor in your city able to inform about good blood samples. It doesn't hurt to try.

Boomer, my XMRV results should come within 2 weeks, and if I am positive, I will certainly either write them a letter or else use the leverage of the speclialists I have seen lately to help me out.
 

julius

Watchoo lookin' at?
Messages
785
Location
Canada
re: Contacting Universities

I found this site http://www.aucc.ca/policy/priorities/university-research_e.html which is the Association of Universities and Colleges of Canada, Advocacy and Research. On the site, Caroline Lachance is named as the primary contact. I sent her the following email.

Dear Ms. Lachance,

I am writing to request information or assistance regarding funding for research into the novel infectious retrovirus XMRV.

In a recent article published in Science Magazine (Lombardi VC, Ruscetti FW, Das Gupta J, et al. (October 2009). "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome". Science 326 (5952): 585-9), researchers have discovered a new infectious retrovirus which was found to infect up to 4% healthy controls.

The study demonstrates that, in vitro, the virus is transmissible via blood plasma. Furthermore, it has been liked to prostate cancer (Schlaberg, Robert; Daniel J Choe, Kristy R Brown, Harshwardhan M Thaker, Ila R Singh (2009-09-22). "XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors". Proceedings of the National Academy of Sciences of the United States of America 106 (38): 16351-16356.)

A fellow sufferer recently contacted The Minister of Health, Leona Aglukkaq informing her of this discovery.

In response, Minister Aglukkaq wrote;

"Public Health Agency of Canada scientists have reviewed the findings and have been in contact with the Centers for Disease Control in Atlanta, Georgia, USA."

"While the CIHR has not yet funded research on the relationship between the XMRV and CFS, it would welcome funding applications
from researchers interested in pursuing further work in this area of
research."

I am writing you to ask for your assistance in notifying relevant research bodies that the government is interested in funding research into this retrovirus. I believe it is important for us to understand the nature of this retrovirus regardless of it's possible relationship to ME/CFS.

If you can provide any information or assistance in this matter it would be greatly appreciated.

I have attached a copy of the letter from the Minister of Health.

Thank you kindly for your attention,
 

Kati

Patient in training
Messages
5,497
That's correct: http://www.cihr-irsc.gc.ca/e/826.html

Here are the equivalent details for Multiple Sclerosis: "The total dollar amount for the specified search criteria is $71,664,429." which is 103 times the figure that shows up for "Chronic Fatigue Syndrome"

OMG, budget allocated to HIV/ AIDS so far is 296 millions!!! Can we have the part of the pie too?
Asthma for 2009-2010 is 150 millions., cataracts 6 millions, thyroid 31 millions, cancer 1.2 billion, cochclear prosthesis 3 millions, epilepsy 94 millions, autism 42 millions.

Of note cfs ranks just about equal in terms of funding with syphilis at 694 thousands.
 

Kati

Patient in training
Messages
5,497
What I think is the governemnt will give out some fund to peple that ask for it- so Julius I think you had the right attitude in asking universities to look into CFS research, or this novel retrovirus- with hope it will interest researchers. It may be valuable to approach molecular biology department at major universities, and medecine schools as well. Perhaps the virology section of your provincial CDC.

Every little bits help.
 

Dolphin

Senior Member
Messages
17,567
OMG, budget allocated to HIV/ AIDS for up to 2009-2010 ..
for 2009-2010
You need to change these to: "up to 2009-10" - these are ever figures (within database). I'll delete this message if you fix your message.