HAWMC Day 2: 5 things you need to know about myalgic encephalomyelitis.

5 things you need to know about myalgic encephalomyelitis. 

1- The Name

Myalgic= sore muscle

encephalo= brain

Myel= spinal cord

Itis= inflammation

Patients call it M.E. 

The other name for the disease is "chronic fatigue syndrome", a very political move by the CDC to minimize the severity of the illness. No disease is called by a symptom. For instance, tuberculosis is not called chronic cough syndrome. If you must use the term "chronic fatigue syndrome, please do not shorten it by saying "chronic fatigue". 

2- The illness:

Patients often present with a flu-like onset or a viral onset, like getting mononucleosis for instance. and they don't recover. Think about getting the worst flu with the worst hangover, day, after day, after day. while some people have a relapsing/remitting illness, mine is progressive. I have no respite and gradually get worse. 

While it affects more women, especially in the middle of their lives, men and children are also touched by the disease. 

The laudry list of symptoms we get is varied and often seem benign but is not. The most important symptom is called "post-exertional neuro-immune exhaustion" or PENE which means if we are overexerting (go beyond our limits, sometimes just having a shower)- we get a worsening of symptoms that is very debilitating, and this can last for days, weeks or even months. 

Headaches, sore joints or muscles, autonomic nervous system dysfunction (blood pressure dysregulation for instance), immune abnormalities (either we get sick all the time or in my case haven't had a single cold in over 5 years), viral reactivations (EBV, shingles, HSV, CMV, HHV-6), crushing fatigue, cognitive dysfunction, pain and inflammation and GI disturbances to name a few. There is no FDA approved treatment for ME, and in fact just a handful of experts are available around the world. 

While patients rarely officially die of ME, unofficial records show that patients die 20 years early of cardiac events, cancer and suicide. 

There has been documented epidemics of ME, in the mid 1980's. One in Incline Village, Nevada, affecting over 200 people and another one in Lyndonville, NY, affecting mostly children. In both instances, the CDC who investigated decided that both patients and physians were "hysterical" and that there were no epidemics. 

This decision from the CDC sadly gave permission to governments, scientific and medical bodies to ignore the disease and not fund research, and patients still pay the price in 2013.

3- The Social Stigma

We are very often and wrongly seen as faking our illness, and malingering in order to get social or insurance benefits. We are seen as lazy people who don't want to work. 

Physicians do not want to care for us, and since the disease belongs to no medical speciality, specialists do not want to follow us if ever consulted. 

Scientists are being told it would be career suicide if they ever wanted to study our illness. 

A prominent group of psychiatrists in the UK portray our patient population as having "false illness beliefs", and caused by childhood abuse. They also spread propaganda like information like cognitive behavioral therapy and graded exercise therapy as the only treatments for our illness. (Researchers in California proved that exercise induce relapse and a cascade of genetic changes producing massive inflammation with minimal exercise). 

With patients becoming housebound and bedbound, isolation worsens, and we continue to be invisible to society, to the physicians and the government. 

4- The Neglect. 

HIV/AIDS was  first discovered in 1982. With billions of dollars in research funding, patients with HIV can now live a fairly normal life in 2013. Through governement campaigns, the stigma of HIV is greatly reduced and patients get respectful care regardless of their social backgrounds, being gay or IV drug user. 

M.E. epidemics were docuented in 1984 in several areas around the world. The governments decided it was not epidemics other than mass hysteria. Abysmal amount of funding in nearly 30 years results in an increasing population of sick patients who are for the most part unable to work. 

In Canada, a community-based survey estimated the number of patients with ME to be 200,000 in 2001 and 411,466 in 2010. And yet, there is no extra effort to find out more about us. ME is currently funded at a rate of 5 cents per patient per year in Canada. Parkinson's disease is funded at a rate of 400$ per patient per year. What is your life worth? 

5- The Impact

Billions of dollars in lost productivity and government revenues 

Billions of dollars in health care costs and government benefits. 

Shattered careers, shattered dreams, loss of income and savings for the future.

Broken, disrupted family lives 

Patients become invsible, it's like we don't exist. 

Remember that this is a lifelong illness and only a minority of patients make a complete recovery. 

Petition to the Health Minister sent.

Over a year after creating the petition to the Canadian Health Minister, I finally printed it out and sent it. It feels good but in the same time I am not holding my breath. The following is the letter sent with it. I have also attached (with permission) Llewellyn King's fabulous piece on CFS, Margaret Parlor from the National ME/FM Action's piece titled Network's Inquiry to CIHR (CIHR stands for Canadian Institutes of Health Research) I felt that both needed to be added- and that the story of neglect and stigma needed to be told.

As a side note I am a terrible editor and notice the mistakes on this letter now... I just wanted to get it done and I am glad it is.

The Honorable Leona Aglukkaq, Tuesday April 2^nd 2013
Health Minister of Canada.

Madam.

I am writing you today to present you with an online petition that has been circulating since February 2012.

The petition request action from the Canadian government to fund research for myalgic encephalomyelitis, also known as chronic fatigue syndrome. I am please to say that 2486 people signed and over 260 commented with pleas for help.

Myalgic Encephalomyelitis is a serious disease for which the number of patients doubled in Canada from 2001 to 2010 according to the Community Health Survey. And yet your January 30^th response to Order Paper #1044 still mentions that the population is stable and that the disease is stable. This is far from the truth.

Typically patients with ME disappear from society and loose the capacity to get heard. Governments do not think it is a serious disease from its old name and physicians do not even hear about this disease while in medical school.

This disease also encompasses many institutes at CIHR which makes it difficult to nail funding. More popular diseases like diabetes, heart diseases, HIV/AIDS and cancer are favored by researchers, making diseases like fibromyalgia and ME left behind. In fact who would spend weeks and weeks applying for a grant for a diseases that is very unpopular and stigmatized when the chances to have it accepted are nil?

You have said many times that health care belongs to provinces, however it does not prevent you from getting involved with HIV/AIDS and also announcing a 100 millions funding for brain diseases.

There are 411 466 patients with Myalgic Encephalomyelitis in Canada (2010) who have no health care, no current Canadian funded research, high amounts of unmet health care needs, and I dare say a highly neglected and stigmatized disease across society, government, science and medicine. It is time that the Canadian government pay attention and start acting.

My February 2012 letter to you is still left unanswered despite receiving an acknowledgement letter from your office in the summer.
It would be worthwile for you to review it.
http://x-tremedenial.blogspot.ca/2012/02/letter-of-advocacy-version-february.html
Along with the petition papers I am attaching a letter titled “Network Inquiry to CIHR” (National ME/FM Action Network) and also an Op-ED by syndicated columnist Llewellyn King, with the hope that it may be useful to you in understanding the neglect and stigma to this disease.

Regards, Kati Debelic,  

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.  

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: http://cfinitiative.org/Dr 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. http://simmaronresearch.com/

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. http://www.davidsbell.com/

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.
www.openmedicineinstitute.org

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: http://www.youtube.com/watch?v=Riybtt6SChU&feature=youtube_gdata_player and his website informs about what he is up to these days: http://chronicfatigue.stanford.edu/ 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: http://www.jpain.org/article/S1526-5900(09)00574-4/abstract and here: http://www.cfids.org/cfidslink/2009/080503.asp
Dr Bateman's work can be seenhere : http://www.medscape.org/viewarticle/759095

8) IACFSME (International Association for CFS/ME) is the professional group which meets every 2 years, last time was in fall 2011 in Ottawa. www.iacfsme.org It is unclear how many canadian physicians attended this conference.
This year they have issued a "primer" for physicians, which you can see here: http://www.iacfsme.org/Home/Primer/tabid/509/Default.aspx

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. http://www.translational-medicine.com/content/9/1/81

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 http://investinme.org/InfoCentre%20-%20Journal%20of%20IiME.htm

And video conference (much recommended) can be ordered for 30$ http://investinme.org/InfoCentre%20Education%20Homepage.htm

11) Recent papers of interest:

A) "Dinstinct Cerebrospinal fluid proteomes differentiate post treatment Lyme disease from Chronic fatigue syndrome"http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

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.

http://www.research1st.com/2011/11/18/pfl-testing/ 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. http://www.ncbi.nlm.nih.gov/pubmed/22039471
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.http://www.ncbi.nlm.nih.gov/pubmed/21793948 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. http://eleanorsteinmd.ca/
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
http://www.cfids-cab.org/MESA/ccpccd.pdf
And this new ME ICC consensus: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full worthy of your time.

4) Dr Byron Hyde http://www.nightingale.ca/ 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. 

Letter of advocacy version February 2012

Mr Stephen Harper, Prime Minister

Mrs Leona Aglukkaq, Minister of Health

Dr Alain Beaudet CIHR

Dr. David Butler-Jones, Chief Public Health Officer

Mr Mike DeJong, British Columbia Health Minister

Mr James Moore, MP Port Moody

Dr Perry Kendall, British Columbia Health Officer

Dr David Patrick, research director Complex Chronic illnesses, Vancouver

Mrs Libby Davies NDP Health Critic

Mrs Hedy Fry, Liberal Health Critic

Mrs Pamela Fayerman, Vancouver Sun Journalist

cc/ Mrs Margaret Parlor, National ME/FM Action

cc/ Dr Ellie Stein

cc/ Dr Alison Bested

cc/ Dr Bruce Carruthers

February 15^th 2012

This letter to you today  aims at finding answers as for why patients with ME/CFS are neglected, stigmatized, discriminated against and left behind, and what is Canada planning to do to help over 411 000 patients in Canada who have no health care and not much respect. If this letter has been sent to you, it's because you have a role to play. It could be sent to all provincials health minister, however has not due to lack of resources, and health from the author. Feel free to share to all concerned.

ME (Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome) is a severe and chronic condition that affects over 411 000 citizens in Canada, according to the 2010 Community Health Survey, 23% more than in 2005. It is one of the most neglected disease, and funding levels by the canadian government is abysmal, assessed at 6 cents per patient per year for the last 10 years. Moreover, ME is an orphan disease, meaning it does not belong to any medical specialty, which means that patients have virtually no access to  competent health care, and most specialists do not want to follow up with patients with ME due to the complexity of care, lack of education in regards to this disease and needs of support with disability insurance. ME is not a psychiatric illness and is not about being tired all the time.

Misconceptions, stigma and discrimination abounds in our society and among our doctors. Dr Carruthers is one canadian co-author of a few papers describing and defining our illness. (Carruthers et al, 2011, Journal of Internal Medicine). One reputable expert for ME patients, Dr Nancy Klimas, says that ME can be just as or more disabling as a late stage HIV/AIDS patient, progressive MS or congestive heart failure. Patients die early of cancer, heart disease or suicide. It is however difficult to track these deaths due to the lack of documentation from physicians. They may also not make the connection between ME and co-morbidities.

There are many complex issues that needs to be taken care of and it is in my opinion that the canadian government, the CIHR and Public Health Agency needs to organize a task force to answer the needs of a disabled population that keeps growing. It is noted that similar conditions like fibromyalgia and multiple chemical sensitivities receive the same neglect and in total, it consists of over 1.1 million citizens with unmet health care needs and related cost to society including high rate of disability.

Your Honorable Health Minister and all, here are a few areas of focus that need to be addressed:

1) Medical education.

ME is not taught in medical schools. Physicians then resort to information on the internet for education and accuracy of such education is often questionable. For instance, my physician was convinced for the first 18 months of my illness that I was clinically depressed and that ME was treated with anti-depressants. A common myth also is that exercise helps patients with ME. In fact exercise triggers inflammatory cytokines which induces relapse. See references below, Light and colleagues.

In order to provide health care to 411 000 patients in Canada, physicians need to be educated about our illness. Moreover, ME needs to be assigned to a medical specialty. Recently following a recent publication of results of a clinical trials in Norway, it was found that Rituximab has significantly helped 67% of patients with ME compared to 12% placebo control  (15 patients in each groups). I personally wrote to the Canadian Rheumatologic Association and 12 rheumatologists in British columbia, asking to be considered for Rituximab. I got 3 answers. One of which said the physician had no time nor the interest to care for patients with ME. please know that rheumatologist, in my experience, have no interest or knowledge in caring for patients with ME. It is to be noted that these results are stronger than the effectiveness of Rituximab in rheumatoid arthritis, which is an approved medication for this illness. Also, one week following the publication of the norwegian study, their government apologized to their ME patients for neglect in health care. I can personally discuss multiple instances of refusal of care, disrespect, and such. My fellow patients also have experiences of this kind. Moreover, the unavailability of testing such as  Natural Killer cells count and function, intracellular pathogens, CD-4 and lymphocyte enumeration, viral titers, tilt table test and access to autonomic dysfunction specialty and treatment are all vital to the care of patients with ME. Viral reactivation is one key feature of our illness, including HHV-6, HSV, VZV,CMV, EBV, Parvo B-19 and enteroviruses such as Coxsackie-B. Why do physicians not think that these tests are important and explain the degree of illness?

Medical students highly rely on experienced professors to learn the art and science of medicine. These professors have not learnt what ME is, or have erroneous knowledge of this disease. Patients need to be involved in ME curriculum Sources of knowledge need to be considered and the preferable one is www.iacfsme.org.

2) Epidemiological studies

Is ME infectious? Can it be transmitted sexually,? Vertically? Casual contacts? How can you explain many members of a same family who are ill with a combination of ME, Lyme, fibromyalgia, autism? In the USA there is about 1 out of 3 US Gulf War Veterans who have "Gulf War Illness". Is this also the case in Canada, masked by diagnosis of depression, post traumatic stress disorder, fibromyalgia and such?

As I mentioned above, there has been an increase of a staggering 23% in reported case of ME in Canada, yet there does not seem to be any concerns about this piece of information.

Most cases present with a viral onset. I am one of them . In my case, I was working as a RN and received saliva from a patient, straight in my mouth and contracted EBV. Or was it just EBV? I also have HHV-6 reactivated, along with Parvo B-19, Coxsakie B-2 and B-6. The last 2 tests were performed in the USA, and prescribed by a caring american physicians who also tested my natural killer cells, which function is much decreased with patients with ME. I am paying out of my pocket for the health care I get in the US. Moreover, results that I bring back to my physicians are discarded and not taken seriously.

Epidemiological studies are much needed, and careful decision about case definition need to be considered. Certain case definition such as the CDC empiric criteria and Fukuda criteria increases the chances to include fatigued and/or depressed patients and this has been reasons why many research studies have been inconclusive. Collaboration with IACFSME, the international scientific association is recommended. Canada needs to keep up with Norway and the USA and offer the best available health care for patients with ME, some of whom have been ill for decades.

3)  Bio-medical research and clinical trials

Health Canada needs to fund research for ME at the same rate as comparable illnesses, for instance rheumatoid arthritis or multiple sclerosis. Currently, there is zero funding. Please stop sweeping this illness under the carpet. Stop stigma and discrimination. You have achieved heaps with HIV AIDS, so why not with an illness that robs citizens and their family of a normal life, and prevents them to work, and contribute to society? You have funded 5 millions dollars for a study on liberation therapy for multiple sclerosis. The prevalence of MS is more than 3 times less as ME, and the level of disability varies just as our disease.

Canada has the technology to perform advanced genetic, deep sequencing and high tech testing. Why not put it to great use?

To those who will say that research teams can apply for funding through competitions I am telling you that Canada needs to encourage research for ME, using proactive measures. Researchers will naturally veer towards paths of least resistance, where funding abounds and chances to get funded are real. Cancer, HIV/AIDS, diabetes, cardio-vascular diseases come to mind. It is time to end discrimination in health care and provide opportunities for all. Please reward scientists willing to step out of the normal boxes and willing to research our illness.

There are no official drugs to treat ME. However there are drugs available in the market that are used by different groups. Health Canada can assist with making these drugs available for our illness, here are a few examples:

A) Imunovir (Isoprinosine): this drug is known to improve natural killer cell function. It has been used by Dr Nancy Klimas in Miami for 2 decades. Dr Byron Hyde in Ottawa has used it in a clinical trials. For obscure reasons, the approval for our disease has not happened and there is a special note under physician info telling them this drug is not approved for our disease. Dr Klimas has to order this drug in Canada for her american patients, yet no canadian physician will prescribe it. Risks to patients are minimal, and since the natural killer cells are essential to cancer prevention, wouldn't it be important to restore this function in patients with ME?

B)Ampligen- has been stuck in phase 3 trial for over 15 years now, in the US. A few centers in the US are now offering the drug, why is it not offered in Canada? I can answer the question myself: no medical specialty, no care, no drug trials. Please end the vicious cycle before more citizens contract the illness.

C) Rituximab has shown superb results in the recently published study (Mella et al. PLoS One, 2011) which showed that patients with ME had significant improvements from Rituximab, administered in the same fashion as for rheumatoid arthritis patients. Critics mentions that Rituximab has significant risks and that is not appropriate for patients with ME. Sadly, these critics have no idea of the severity of our illness. Dr Mella, an oncologist and co-author of the research, mentioned  that this disease is severe and disabling enough to warrant aggressive treatment. Moreover, no serious complications including infusion related or infections were encountered during the course of their trial.

D) Long term anti-viral therapy: Valcyte, Valtrex and novel antivirals. The work of Dr Montoya and Dr Lerner have shown that some patients improve with the long term use of anti-viral like Valcyte and Valtrex in order to control reactivation of herpes viruses which is well known for patients with ME. Yet, patients are laughed at if they simply ask their doctors, and even infectious disease doctors refuse to test for these. These treatments need to be offered to patients in Canada in the same way these treatments are offered for HIV/AIDS patients. Testing for viruses is greatly restricted in Canada and titers are not offered. This is a problem. A fellow patient with ME had great problems getting health care with pericardial effusion, in fact she was turned away from emergency after presenting with chest pain. She traveled all the way to Germany for a heart biopsy which proved she had active Parvo B-19 infection. Worse is coming back, she had a terrible time finding a physician to treat her for the infection.

Sadly, most of the time, because we have the words "chronic fatigue syndrome" attached, we are treated as malingerers, psych patients, tired people and attention seekers. Patients with ME have highly unmet health care needs and it needs to be addressed. It has been like this for decades. Many papers lead to a biological cause, notably, infectious, immunologic or rheumatologic. Please end discrimination and stigma and offer equal opportunity for health care for all of us.

4) Finding the right partners

All governments should be ashamed of the history of ME, notably Great Britain and the United States. Neglect and abuse come to mind. The history can be summarized by an excellent article by journalist David Tuller and book by journalist Hillary Johnson.

David Tuller: Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

Hillary Johnson: Osler's Web ( www.oslersweb.com)

It is absolutely critical that the same mistakes do not happen again.

The PACE Trial from the UK has received a fair amount of press. It suggest that ME can be treated with cognitive behavioral therapy and graduated exercise therapy. However this study contains gross flaws, considering they use a mix of depressed patients, fatigued patients and mild ME patients. I am suggesting you read the comments attached to this paper and that you use the conclusions of this paper very, very cautiously. HIV/AIDs is not treated with CBT or GET and  neither should we.

The CDC has misappropriated funds in the 1990's, and has diluted the ME/CFS definition to include depressed patients. They have avoided researching infectious agents and have spread a whole lot of misinformation to physicians around the world.

Please network with reputable experts in the field, notably, Dr Dan Peterson (Incline Village), Dr David Bell, Dr Enlander, Dr Byron Hyde, Dr Bruce Carruthers, Dr Nancy Klimas, Dr Jose Montoya, Dr Andreas Kogelnik,

Dr Cincy Bateman, Dr Charles Lapp, the Whittemore- Peterson Institute, Dr Paul Cheney, Dr De Merleir ( Belgium) are the known experts in the field ad get much respect and trust from the patients. Those are also the physicians that have made progress in understanding the disease.

It is now time for Canada to step in and make use of our scientists and resources to find treatments and allow patients to have a normal life, and be productive in society.

I have written other advocacy (plea letters) in the past, and I was redirected to various organisms (College of physicians, CIHR, provincial governments) some of whom have redirected me back to Health Canada. Please! I am a very sick person fighting for my life! Patients with cancer, AIDS, MS and others have organizations to do the advocacy for them and these organizations are very successful in attracting attention. In contrast, folks at National ME/FM Action are currently too sick to answer emails, and otherwise there is no one. once again, due to the fact that no medical specialty is responsible for ME and CFS, we continue to fall into the cracks of the system. I am asking for your help on behalf of hundreds of thousands of sick patients with a disease that is discriminated against. Mrs Aglukkaq has awarded 5 millions to research liberation therapy, I am sure she can do something for 411 000 (and growing) with no health care at all and no funding at all for critical research.

In March 2011 the BC government has volunteered 2 millions dollars for a clinic and a study for patients with Complex Chronic Illnesses which includes ME, Fibromyalgia and Lyme disease. At the time of writing this letter, one year later, we are still waiting to find out who will be the medical director. The help, the treatments are largely anticipated, but will there be any treatments? How long is it going to take? What about fellow patients from other provinces? Will there be enough physicians and staff to meet the demand? Will there be appropriate testing, the type that applies to our illness?

I thank you for your attention and eagerly wait for much needed health care.

Kati Debelic

References:  

Fluge Ø, Bruland O, Risa K, Storstein A, Kristoffersen EK, et al. 2011 Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study. PLoS ONE 6(10): e26358. doi:10.1371/journal.pone.0026358

Ekua W Brenu1, Mieke L van Driel1,  Don R Staines,  Kevin J Ashton,  Sandra B Ramos,  James Keane, Nancy G Klimas and Sonya M Marshall-Gradisnik 2011  Immunological abnormalities as potential biomarkers in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis Journal of Translational Medicine 2011, 9:81 doi:10.1186/1479-5876-9-81

Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C. P., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisbik, S., Mena, I., Mikovits, J. A., Miwa, K., Murovska, M., Pall, M. L. and Stevens, S. (2011), Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 270: 327–338. doi: 10.1111/j.1365-2796.2011.02428.x

Schutzer SE, Angel TE, Liu T, Schepmoes AA, Clauss TR, et al. 2011 Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome. PLoS ONE 6(2): e17287. doi:10.1371/journal.pone.0017287

Broderick G, Fuite J, Kreitz A, Vernon SD, Klimas N, et al. A formal analysis of cytokine networks in chronic fatigue syndrome. Brain Behav Immun. 2010;24:1209–1217. [PMC free article] [PubMed]

Lerner AM, Beqai S, Fitzgerald JT, Gill K, Gill C, et al. Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome. Virus adaptation and treatment. 2010;2:47–57.

Kogelnik AM, Loomis K, Hoegh-Petersen M, Rosso F, Hischier C, et al. Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue. J Clin Virol. 2006;37(Suppl 1):S33–38. [PubMed]

J Chia, A Chia, M Voeller, T Lee, R Chang Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and viral persistence J Clin Pathol 2010;63:165-168 doi:10.1136/jcp.2009.070466v

Hollingsworth KG, Hodgson T, Macgowan GA, Blamire AM, Newton JL Impaired Cardiac Function in Chronic Fatigue Syndrome measured using Magnetic Resonance Cardiac Tagging. J Intern Med. 2011 Jul 27. doi: 10.1111/j.1365-2796.2011.02429.x.

Leonard A. Jason, Abigail A. Brown, Erin Clyne, Lindsey Bartgis, Meredyth Evans, and Molly Brown

Contrasting Case Definitions for Chronic Fatigue Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Eval Health Prof 0163278711424281, first published on December 7, 2011 doi:10.1177/0163278711424281

Jones, D. E. J., Hollingsworth, K. G., Jakovljevic, D. G., Fattakhova, G., Pairman, J., Blamire, A. M., Trenell, M. I. and Newton, J. L. (2012), Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case–control study. European Journal of Clinical Investigation, 42: 186–194. doi: 10.1111/j.1365-2362.2011.02567.x

Jonathan R. Kerr, John Gough, Selwyn C. M. Richards, Janice Main, Derek Enlander, Michelle McCreary, Anthony L. Komaroff, and John K. Chia

Antibody to parvovirus B19 nonstructural protein is associated with chronic arthralgia in patients with chronic fatigue syndrome/myalgic encephalomyelitis

J. Gen. Virol. 2010 91: 893-897.

Kaushik, N., Fear, D., Richards, S. C. M., McDermott, C. R., Nuwaysir, E. F., Kellam, P., Harrison, T. J., et al. (2005). Gene expression in peripheral blood mononuclear cells from patients with chronic fatigue syndrome. Journal of Clinical Pathology, 58(8), 826-832. Copyright 2005 Journal of Clinical Pathology. Retrieved from http://dx.doi.org/10.1136/jcp.2005.025718

Light, A. R., Bateman, L., Jo, D., Hughen, R. W., VanHaitsma, T. A., White, A. T. and Light, K. C. (2012), Gene expression alterations at baseline and following moderate exercise in patients with Chronic Fatigue Syndrome and Fibromyalgia Syndrome. Journal of Internal Medicine, 271: 64–81. doi: 10.1111/j.1365-2796.2011.02405.x

Mathew, S. J., Mao, X., Keegan, K. A., Levine, S. M., Smith, E. L. P., Heier, L. A., Otcheretko, V., et al. (2009). Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T (1)H MRS imaging study. NMR in Biomedicine, 22(3), 251-258. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/18942064

Letter to our canadian health minister

The honourable Leona Aglukkaq, Canada Health Minister.

Recently I have heard you assigning 5 millions into a clinical trial of “liberation therapy” for multiple sclerosis patients. These patients were going out of country to get this procedure done, and following their request to offer the treatment here in Canada, you agreed and allocated some money.

I am a patient with ME/CFS, (myalgic encephalomyelitis/ chronic fatigue syndrome) which is a neurologic disease as per the World Health Organization. This disease get very little respect in the medical world and very few physicians are knowledgeable about it. In fact I would be surprised that medical students get appropriate teaching about it. ME/CFS can be just as severe as someone with congestive heart failure, end-stage AIDS or progressive MS.

Patients with ME/CFS are usually left to their own mean, receive no medical care and can be very disabled by this illness. The burden it causes to society is enormous, from loss of wage, to medical costs to disability pension payments. Patients are also often discriminated against due to the name of this illness, since most physicians who haven't received any education for ME/CFS think this is quite a benign illness. Lots of patients will report that their physician do not take their symptoms seriously, like chest pain, headaches and other neurologic symptoms. In fact the 3 main causes of deaths for ME/CFS patients are cancer, cardiac events and suicide. Suicide happens due to the lack of support, medical care and beliefs that us patients are malingerers.

Mistreatments have happened in the past with MS patients who would be hospitalized in psychiatry and diagnosed with hysterical paralysis. Recent studies have shown that ME/CFS is not a psychiatric illness, does not get treated with cognitive behavioral therapy or graduated exercise therapy, and may be of infectious origin, from the work of Lombardi et al at the Whittemore-Peterson Institute and Shutzer et al.

http://www.sciencemag.org/content/326/5952/585

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287

Statistics Canada counted over 413 000 ME/CFS sufferers in 2010, a 25% increase compared to the last statistics in 2005. Yet recent studies have shown that 80% of ME/CFS patients do not get diagnosed as such and usually discounted as simple fatigue. The amount of money awarded for our illness has been abysmal, lower than 1 million dollar in total in the last 10 years, and most research have been of psychological or behavioral nature. In contrast, there are between 50 and 75 000 patients with MS in Canada that receive millions and millions of dollar in research every year.

Immunologists have proven immune activation and changes in cytokines, natural killer cell function and chronic viral reactivation which are totally ignored in Canada. Moreover, patients with ME/CFS may have an infectious retrovirus as per Lombardi et al.

Patients with ME/CFS get no healthcare here in Canada and no research. The numbers of patients are growing rapidly, however their concerns are still discounted. It is time that our governments who have once received our taxes wake up and start paying attention and stimulate research in our field. Moreover, it is time that the medical field wakes up and that more physicians get trained in caring for us. The fact that this complex illness belongs to no medical specialty is a travesty.

Currently in the USA a clinical trial (phase 3) of Ampligen is going on. Ampligen, an immuno modulator has been in the market for over 15 years now- yet it hasn't been approved to use. Patients should be offered this medicine so they can get relief from their illness and perhaps return to work. Patients should have the same access to health care as patients with cancer or HIV/AIDS.

Today Mrs Aglukkaq I am requesting your attention. Canada is hosting the international ME/CFS conference in Ottawa in September, yet, beyond our community, no one knows about it. I am requesting that you stimulate research funding for ME/CFS and recommentd physicians to get educated about our disease, and start offering treatments like Immunovir, Rituximab (Norway study)  or Ampligen and anti-virals such as Valtrex and Valcyte (Lerner, Montoya). Pathogen studies like XMRV and other Gammaretroviruses should be of great concern for our governments and should be researched with great care.

It is time that our Canadian government pays attention to over 413 000 citizens who are sick and get no health care.

Thank you,  Kati sick for 2 years and 8 months. 

Kati Debelic