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 www.clinicalevidence.com. 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.

Kati

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.