Sunday, September 23, 2012

My CFSAC testimony

Note: CFSAC stands for Chronic Fatigue Syndrome Advisory Committee and is a US federal advisory committee that sends recommendations to the Secretary of Health Mrs Sebelius who acts on behalf of the President. There are 2 meetings a year and patients can send testimonies, and even speak to these meetings.

Here is my testimony:

CFSAC testimony October 2012

Hi, my name is Kati

I am 43 and live with ME for almost 4 years now. I am Canadian.

I have watched the CFSAC proceedings for 3 years now. I have been advocating for health care in my own country for a while also. My own government is not answering my letters.

In Canada we have a “Community Health Survey”- which is a questionnaire about chronic diseases sent every year to a number of Canadians, and then statistics are made to generalize their findings about the whole country.

Questions pertaining to CFS (that's how they call it) do not happen every year. A single question has been asked in 2001, 2005 and 2010 and is asked this way: Do you have CFS? (they require that they are diagnosed by a medical doctor in order to answer yes).

In 2001, they estimated 200 000 patients with CFS.
In 2010 there were 411 500, 24% more than in 2005 and 205% more than in 2001. And by the way the Canadian government is funding 0$ for ME/CFS and what totals to 6 cents per patient per year over the last 10 years. Less than peanuts.

Granted, we are not quite sure what it means. Are these chronically tired people? Are these genuine ME patients with post exertional neuro-immune exhaustion? Are these people getting the care they need? We don't know. My best guess is not many people get care for their disease here, as there are no current treating clinics. There are a few sympathetic physicians, but no testing available, and certainly no canadian is getting medical treatment like anti-viral therapy or Rituximab for instance.

I have sent a letter to the Canadian health minister, Leona Aglukkaq, and asked about what they were planning to do about this raise in number of patients? No answer. My best bet is they are waiting to see what the statistics will say in 2014, the next time a question will be asked in the Community Health Survey, as it pertains to “CFS”

You see, Canada is waiting to see what the US will do. And this is you. Other countries are also waiting. Norway, Sweden, Germany, Australia, maybe even UK. I wonder if this was the case in 1982 with the HIV/AIDS outbreak?

Most of the current ME research that is conducted is not funded by governments. Why? (I will take on this opportunity here to thank the Hutchins family for giving out 10 millions for research this last year.)

The thing is, I think the US government is also waiting to see if something is going to emerge. What I hear from our own experts, the only ones that dare caring for us is not to expect any research funding from the NIH- why? Our experts need financial support. They are the ones that know best how to conduct a study in people with ME, how to select a good cohort and how to avoid pittfalls that so many have fallen into, namely the CDC. (The idea that if the root cause of an illness is not known, then it must be psychological has got to go). There is 1-4 millions of sick patients in the US, more deployed and non-deployed veterans with similar illness, then the case of Lyme disease which has so many overlapping symptoms that it's very difficult to tell them apart. All these people are marginalized, denied benefits, denied a good life, due to governments who do not want to research them. Billions is spent to HIV and cancer, both of which get support from politicians. What would be 1 percent cut in both diseases? A drop in the bucket for them, diamonds for us.

And what about us? We are people too.

We hear that the CDC is turning around, following the Bill Reeves empire, after years and millions of misused funds. I don't think that I am lying if I said that the patient community is very very guarded about the CDC. Patients need proofs that they are willing to do the right thing, show goodwill and burn the toolkit as suggested at the last CFSAC.

Could it be because what happens in the UK matters more than doing the right thing? We the patients all know what is going on in the UK. Simon Wessely is still alive. He has friends, Peter White, Trudi Chalder, Anhony Cleares, and the rest of them psychiatrists who have ties with the insurance industry.
Every time a psych paper gets published, childhood abuse, unmotivated fatigued patients, and all, well it gets picked up by the media all around the globe. It's called propaganda. A biomedical paper as it pertains to ME would not attract such media attention, perhaps except the Lipkin study finally de-discovering XMRV.

It is time that governments around the world start saying no to these psychiatrists who want to rule what is a psych illness if patients have a disease called ME or CFS- It is time that governments take on our side, and fund sound biomedical research. Psychiatrists have said before that Multiple Sclerosis was “hysterical paralysis” and that stomach ulcers were due to “type A personnality”. Everyone would agree that they were wrong. Patients with ME have been ill since epidemics, and even before. No one has been able to think themselves back to health.

My own provincial government is posting health information about ME which has ties from the UK psych lobby. Their reference takes me to It tells everyone who look it up that CBT and GET are the only clinically proven therapies. And who reviews this? Simon Wessely and co.

You see, all of the countries have the capacity to do something really meaningful for patients with ME/CFS- only they have got to stop and wait until someone else does the work.

This has got to stop. It is abuse, neglect and disrespect. Patients have said it over and over throughout the years at CFSAC. We are worth more than peanuts.

Thank you.


P.S. I have to say that I am concerned that no recognizable name sit on the CFSAC panel- other than Mary-Ann Fletcher. Why are our physicians and known scientists not bothering sitting on such committee, and is the well being of the patients really well represented if these panel member know nothing about ME/CFS or do not treat it? I am worried.  

Monday, September 10, 2012

Bio-medical research for ME/CFS

Recently a canadian politician, Carolyn Bennett, MP in the Toronto area, asked me what was going on in the ME/CFS research world, south of the border. Dr Bennett is a medical doctor, who has moved on to the political world. She is part of the opposition in the House of Commons and has been giving of her time for her constituents, notably being in a Facebook chat every week to whoever wants to talk to her.

I wanted to talk to her. I have things to say about health care, health research as it pertains to Canada. I want to understand the politics, and I want to help politicians understand the situation of 411 500 of us stuck with ME/CFS.

So when, after a few weeks of exchanging chats, she asked me what was going on in research, I saw it as an opportunity.

Here is what I wrote. It came mostly by memory. I think I covered the essentials, though some will think I don't have the name of the disease right (always a contentious topic), or I don't have the doctors right. I gave her a tour of the specialists who have been active recently in the field of ME, and I mentioned the work worthy of mentioning. Feel free to use this work for advocacy purposes.

Hello Carolyn. As promised, here is a "brief" explanation of what is going on in research in the US and around the world for ME/CFS research (myalgic encephalomyelitis aka chronic fatigue syndrome). By all means it is not exhaustive but it is the essential of what is currently going on.

1) A paper by prominent virologist Ian Lipkin is due to publish On September 18th. It is about the association of ME/CFS with retrovirus XMRV and/or polytropic murine leukemia virus.

2) CFI- stands for Chronic Fatigue Initiative. A private benefactor gave 10 millions $ for ME/CFS research last year, and this money is being used for various projects including epidemiology, biomarkers, case definition, etc. More info: Klimas, immunologist in Miami Florida is deeply involved with these projects. She has dedicated most of her career to patients with ME/CFS. She tests pts' Natural Killer cell function which is always very low for us. (testing which is not done in Canada) NK cell function btw is also low in HIV/AIDS patients.

3) Dr Dan Peterson: Is an Internist in Incline Village, Nevada (Tahoe) where an epidemic of ME/CFS started in 1984. Dr Peterson Founded Simmaron Research and he has collected thousands of blood and CSF samples of patients with ME/CFS. An abnormally high number of his original cohort went on to have rare lymphomas, notably mantle cell lymphoma. He treats patients with various anti-virals and also Ampligen, a drug that has been stuck in clinical trials for decades.He works with Open Medicine Institute and Phanu (Australia) with genetic and immunology projects.

4) Dr David Bell from Lyndonville NY is also another internist in a small town in NYC where there was an outbreak of ME/CFS in children inthe 1980's. These outbreaks were deemed "hysterical" by the CDC btw. Dr Bell is now retired but has a website with many valuable tools and stories.

5) Open Medicine Institute (Dr Andy Kogelnik) Dr Kogelnik is an infectious medicine dr who is currently preparing multi-center clinical trials with Rituximab for patients with ME/CFS following the work of Dr Fluge and Mella in Norway. Open Medicine Institute is located in the Silicon Valley and this dr has been gathering the gems of all scientists in genomics, computational biology, system biology, social networking and more and building on. Dr Kogelnik previously worked under Dr Montoya (below) with the Valcyte study. The research is starting, however federal funding is very difficult, I believe he will ask patients and the private sector to fund his research. He is collaborating with the CDC on an epidemiology study amongst other things.

6) Dr Montoya (Stanford University) is also an infectious disease dr. He is famous for his Valcyte study on patients with ME/CFS. He proved that Herpes virus IgG titers could be reduced by giving Valcyte. Patients with ME/CFS most often have viral reactivtion, especially EBV, HHV-6 and CMV. Viral titers are not done in Canada unless you have HIV. Personally I have chronically reactivated EBV. I also have developped bilateral shingles on the feet which drs couldn't believe could happen. Dr Montoya has a very informative lecture on you tube: and his website informs about what he is up to these days: He is very active in research and patients from the Bay area are constantly recruited.

7) Dr Bateman (Salt Lake City) has been doing a lot of CME work. She is a GP specializing in ME/CFS. She collaborates with Dr Light who has proven that ME/CFS and depression were 2 separate entities. His stunning paper maybe of interest to you: and here:
Dr Bateman's work can be seenhere :

8) IACFSME (International Association for CFS/ME) is the professional group which meets every 2 years, last time was in fall 2011 in Ottawa. It is unclear how many canadian physicians attended this conference.
This year they have issued a "primer" for physicians, which you can see here:

9) PHANU (Population Health and Neuroimmunology Unit) Dr. Marshall-Gradisnuk/Dr Don Staines are doing ground-breaking research on autoimmunity as it pertains to ME/CFS, including research on the NK cells. They recently presented at a conference in London called "Invest in ME"- they collaborate with Dr Kogelnik, Peterson and Dr Klimas in Miami.

Immunological abnormalities as potential biomarkers in chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

10) Invest in ME- is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
Their goal is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal "thumb-print" test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.

Please view their journal

And video conference (much recommended) can be ordered for 30$

11) Recent papers of interest:

A) "Dinstinct Cerebrospinal fluid proteomes differentiate post treatment Lyme disease from Chronic fatigue syndrome"

Lyme disease is another neglected disease which leaves patients Without ressources or health care in Canada. This fascinating paper shows they are differnet diseases with overlap.

B) VanNess JM, Snell CR, Stevens SR, Bateman L, Keller BA. Using serial cardiopulmonary exercise tests to support a diagnosis of Chronic Fatigue Syndrome. Med. Sci. Sports. Exerc. 38(5), 2006.

The work of Staci Stevens and Christopher Snell Has been critical in proving that indeed I was sick and disabled. Using consecutive days cardiopulmonary exercise tests, patients with CFs cannot reproduce results on the second day, which features the "post exertional phenomenon" of our illness. Obtaining disability insurance is critical for us amd very difficult to get since insurance companies like to think this is all in our heads and there are no biomarkers. Well in Canada, there aren't. this has to stop.

C) The Rituximab paper.
an important story that has to be told. The same researchers will try Rheumatologic drug Enbrel on the patients who have not responed to Rituximab.

It is to note that I have written to 14 different rheumatologists in Canada asking them to participate in multi-center trials with Rituximab or give it to me as compassionate access. Suffice to say that rheumatologists do not want to get involved in the care of pts with ME/CFS.

D) Impaired cardiac function in Chronic fatigue syndrome measured using Magnetic Resonnance Cardiac tagging. More proof we are really sick.

Finally, all these efforts are being counteracted by a powerful lobby of UK psychiatrists with vested interests with governments and insurance companies telling our doctors, the CDC and our insurance companies that our disease is due to abuse as a child, that it is treated with CBT (cognitive behavioral therapy) and GET ( graded exercise therapy). This same group of physicians in fact came to Vancouver in the mid 1990's and told our dr we had "false illness beliefs" effectively closing a clinic held by Dr Carruthers. Following this, one of our long time patient mentioned there were many suicides.
Flawed psychological studies are being published by these psychiatrists, and allowed to circulate in the papers like propaganda.

In Canada, very few physicians treat ME/CFS or help with disability insurance.

1) Dr Alison Bested is leaving her practice in Toronto and accepted a position of medical director at the Complex Chronic Diseases in Vancouer, a 2 millions funded by BC- covering mostly Lyme, ME/CFS and Fibromyalgia. She will start October 1st, and the clinic has not opened yet.

2) Dr Ellie Stein, Calgary, psychiatrist who can assure that this illness is not psychiatric in nature, though depression can be rampant due to the extreme neglect.
she just published in the Canadian Journal of CME. 

3) Dr Bruce Carruthers, Vancouver, internal medicine, has had a very very long carreer. He is the authors of 2 definition papers
And this new ME ICC consensus: worthy of your time.

4) Dr Byron Hyde is in private practice, offering careful diagnosis and legal proof of disability.

5) Dr Gordon Broderick is a scientist (computational biology) working in Alberta and collaborating with Dr Nancy Klimas in Miami.

I hope that these can be of assistance to you. Again, there is 0$ federal research for ME/CFS, the Community Health Survey 2010 shows 411 500 of us are affected, 205% more than in 2001. Mrs Aglukkaq has failed to respond adequately to my letters.