My story / Piece for @Anon_WatchCA

My story

I would like to share my story with you. I am just an ordinary canadian citizen. I have finished school and started working as a registered nurse. I am now 43. I paid my taxes like everyone else. And I was convinced that my government would look out for me should I get sick. I was wrong.

At age 39 I got sick with mononucleosis, a disease that usually teens get, and recover from. I never thought this illness would change my world. I was given 6 weeks to recover. However when the 6 weeks ended, and I was not better, then 12 weeks and still not better, my workplace started feeling I was faking it. It wasn't like I was in bed, I was in fact trying to get better, going out for walk to get stronger, and continuing my photography course I was taking.

Then I got sicker. I got struck with a bad gallbladder which didn't contain any stones but then it was found to be necrotic. I was then given 8 more weeks to recover since it was a major surgery and I was so ill, having stayed 2 weeks in the hospital.

The 8 weeks came and went. I was not recovering from that surgery, and other not so specific symptoms came about: inability to be upright, also called orthostatic intolerance, difficulty driving with altered perceptions, photophobia, difficulty with heat (it was summer). My physician was baffled though she mentioned the F- word. “Chronic fatigue” she said.

I later learnt to hate the word, fatigue. “Chronic fatigue syndrome” is what I have, however we the patients prefer to call it “ME” or myalgic encephalomyelitis, because it is less stigmatizing than CFS and much less insulting than simply “chronic fatigue”. See, most people gets tired at the end of a long day. Mothers who work full time will normally experience fatigue.

My GP looked up my disease on the web, went straight to the CDC website, and found that I needed anti-depressants. She felt I was depressed. I tried to express the best I could that I was not depressed, perhaps disappointed that she couldn't understand. I took her 2 years to understand. And still now, she doesn't want to get involved too much. Then I got chest pain and shortness of breath. And then she told me it was the CFS. In fact everything was because of the CFS. No symptom is serious now that I have CFS.

See, having ME means getting stimgatized. No one wants to take care of you. You're complicated, you need paperwork to get the disability papers and you're not going away, so to speak, since patients don't die quickly. Specialists, especially rheumatologists I have found out, wants to take us on. Scientists get told they would commit career suicide should they decide to research ME. Governments have learnt to be really quiet about this illness. It's all hush hush. Canada is funding 0$ research, and there is no political will to fund this disease. See, if we died, at least, the government would investigate whether this is an infectious disease. What the government doesn't know is patients with ME die 20 years early of cancer or heart disease. And suicide. Patients sometimes cannot take the neglect and stigma, and take on their own lives.

The psychiatrists have profited from this disease. Since the disease is poorly explained due to the lack of research, it has provided grounds for them to explain “false illness beliefs” and “somatic disorders”. In fact, psychiatrists in the UK have been funded 10 millions to decide whether cognitive behavioral therapy or graded exercise therapy were helpful- and by manipulating statistics, they managed to conclude that it may be of help. Patients in the UK have been known to be hospitalized in a locked down unit in psychiatry, telling the family that it is necessary and forcing the bedridden patients to get moving and take care of themselves. That ordeal has actually killed people. Imagine being paralyzed and being told to get up and walk? Patients with severe ME are unable to care for themselves. Light, sound, touch is all too much for their nervous system to handle. Why? We don't know.

There were well described epidemics of ME in the US and even Canada in the 1980's. One of them happened in Lake Tahoe. 2 physicians served that little village, and cared for over 200 patients who got ill with a bad flu, which disabled people. An alarming number got a rare lymphoma called Mantle cell. A majority of a high school basket ball team got ill, and quite a few teachers from the same school. The 2 physicians decided to contact the CDC (Center for disease Control) who sent out 2 epidemiologists to investigate. Apparently the latter were more interested to go hiking than seeing patients or reviewing files. They returned to Atlanta concluding that the patients and physicians simply had “mass hysteria”. It was then that the CDC called this disease chronic fatigue syndrome, because it didn't look bad.

At the same time, the CDC was dealing with one of the biggest scandal of all times with the HIV/AIDS epidemics. With the number of deaths rising, they had no choice to fund research and treatments. 30 years later, HIV/AIDS is now considered a chronic disease and is no longer (in general) a death penalty. Patients can live a long life with treatments thanks to billions of dollars in funding.

Patients with ME, in contrast, have disappeared from society. Those who got sick 30 years ago still live with their parents, some of them have never been able to finish high school, to marry and have children. Some managed to get married and somehow function (some patients get a relapsing/ remitting type) only to have children who acquire the disease themselves.

After quite a few bad experiences with local physicians, I decided to go get health care in the US. The patient community know who are the very few doctors who will care for patients of our kind. And there are only a handful to choose from. I saw an immunologist who noticed the common immune deficiency that all patients with ME have, a deficit in Natural Killer cell function. I had chronic immune activation and reactivation of certain viruses that are supposed to lay dormant in the body. She made recommendation for a drug that is offered in Canada, but now it the US, but then I couldn't go back to my physician in Canada and get it prescribed, since it was off label! She also diagnosed me with an autonomic nervous system disorder called POTS (postural orthostatic tachycardia syndrome) which could explain the chest pain and shortness of breath. The emergency physician does not have a clue what it is. In fact there is only one specialist working in British Columbia that knows how to treat it, however the specialist knows about dysautonomia as it relates to paraplegic patients.

As of this year, my health has further declined, constantly from the start, without remission. I have decided to travel to San Francisco to get treatment with cancer agent Rituximab which has shown promise for patients with ME. A phase 2 clinical trial in Norway has shown great promises and I am lucky to have found a physician to prescribe and big pharma to fund the drug for me (6000$ a dose, I will need 5-6 doses this year). Following the publication of that paper, I sent a copy to 12-13 rheumatologists specializing in clinical trials (they already give Rituximab for rheumatoid arthritis patients) – 3 of whom replied to me that would not prescribe it to me and one wrote he has no interest or time to care for patients with ME. One of the curse of our disease is that it does not belong to a medical specialty. It means that there is no obligation to care for us. And as you may know there is a great need of family physicians, and they do not have time (and often desire) to care for complicated patients with great needs. In general, physicians think that Rituximab is a toxic drug that is too strong for a disease like ME, however they have no clue how terrible of a disease ME is, they usually think ME is very benign, because patients don't look sick when they come to their office. The same doctors do not understand that a hallmark of the disease is post exertional neuro-immune exhaustion, which means that every little task can trigger major relapse of symptoms. For me, walking 25 meters triggers lactic acid in my legs (I used to be a long distance cyclist). Go see a doctor may send me in bed for days and trigger terrible headaches.

Statistics Canada hold out a big survey of chronic diseases every year called the Community Health Survey. It is believed to be very accurate in counting the number of patients and their demography, amongst other things. They asked questions as it pertains to CFS in 2005 and 2010. Here is what we know. In 2010, Stats Canada counted over 411 000 patients in Canada who self reported chronic fatigue syndrome. (more than 3 times as much as patients with MS, to compare) From 2005 to 2010, there has been a rise by 24% in the number of patients in Canada. How do you explain the change, you ask? Well it could be a few things. It could be infectious, it could be that patients consider themselves more tired, or misdiagnosed themselves as having the syndrome- again please do not associate tiredness with having CFS. There are many many more symptoms associated with the disease. It could be more physicians recognize the disease and diagnose more. We don't know. The only thing we know is that the next time the Community Health Survey will ask the CFS questions will be in 2014. In the meantime, nothing.

Moreover, Canada is not funding any study for ME to this day, and a 10 years review shows the government is funding our disease at a rate of 6 cents per patients per year. Disability rate is high for this patient population (cost to society) and recovery rate is very low.

I have taken on the task to find out why such a steep hike in the number. But get this. I can't get an answer. I have send a letter to Mrs Leona Aglukkaq, which she failed to answer. I have written a petition, which each signature sends an email to the health minister and prime minister. I have 2080 signatures, and counting. I have tweeted to the health minister (@leonaaglukkak) and she has managed to block me from her twitter account.

Now I am sick. I cannot afford to get too worked up, because stress makes me sick. But I find that this behavior unacceptable. Patients with ME are too ill to “Act up” and organize movements to protest the level of funding. Too sick to follow up with many physicians, MP's and politics. Eventually, the ones that try eventually have to give up, due to ill health. These patients, like I said before, literally disappear from society.  I spend a majority of my time in bed, in a darkened room with an Ipad to keep me company. 

And here I am. Sick for 3.5 years. Fighting for my life. Fighting for health care which we don't have in Canada. Fighting for recognition and loss of stigma. Fighting for the canadian health minister to stop ignoring 411 000 patients who have a disease that no one wants to research, or treat. It is too early to tell if Rituximab will work for me. I cross my fingers.

What I promise to you is that I will not be silenced. I will continue to speak up on social media about my disease and how neglected and stigmatized it is, and how there is no plan whatsoever to fund canadian research. I will fight, until I cannot fight anymore.

Mrs Leona Aglukkaq, if you are reading this, please respond to my letter from February 16^th, and please start talking to your group, the provinces, CIHR, Public Health Agency and the experts from around the world about what needs to be done. The time is now, not 3 years from now.

I can be reached through twitter @katiissick and on Facebook (Kati Rituximabtourist) - please send me an introductory message if you want to add me on facebook) and email katidebelic (at) shaw.ca

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

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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

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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

Open letter to Dr Fred Friedberg

Dr Fred Friedberg, president,

IACFSME

Subject: New Announcement

Dear sir,

My name is Kati D I am a patient with ME since November 2008. I was then a registered nurse, and my health status changed forever following a primary EBV infection. I never recovered. It got worse with a bad case of necrotic gallbladder some 4 months later, and my symptoms just worsened from there. My family physician could not explain why I was not recovering from my surgery and felt I was depressed. “This is how you treat chronic fatigue”, she said.

I certainly understood my diagnosis more than she did, and I quickly learnt from my peers that the chest pain and shortness of breath were not benign and that I needed to be horizontal as much as possible.

This week I have learnt from your press release that the international ME association who gathers the best scientists in the field will publish a quarterly peer reviewed journal called “Fatigue: Biomedicine, Health and Behavior”. It is with dismay that I am writing to you, trying to understand why the IACFSME desires to perpetuate the stigma of fatigue in ME patients, and continue studying fatigue both biologically and psychologically.

Fatigue exists in other diseases. AIDS, cancer, MS, lupus, cardio-vascular patients all experience fatigue to varying degrees. However, fatigue is addressed by treating the root cause of the disease, through anti-virals and anti-retrovirals, cardiac surgeries and cardiac drugs, chemo agents. In the case of ME, scientists have not yet found a biomarker or cause of the illness, but the work of several scientists, notably Jonathan Kerr, Nancy Klimas, Dr Lerner, Montoya, Peterson, etc have given some important leads. We need more work.

I and several of my fellow patients who are awaiting for treatments, are worried that a journal about fatigue may not be the right direction, and wonder how this came about- and whether this has been initiated by others who may not understand our disease well or may have an agenda other than finding biomedical treatments for patients.

As you may understand, patients with AIDS, cancer, MS, lupus and the like, are not helped by cognitive behavioral therapy, but usually improve with proper biomedical treatments. Why are patients with ME so different and need to be subjected to CBT and GET, and subjected to clinical trials on that regard, and why is IACFSME planning to host these authors in this new journal called Fatigue?

I haven't signed up for this illness. I am particularly ashamed today to have such illness that doesn't have recognition, respect, and credibility from most physicians, but worse, it seems that IACFSME is following the steps of those who have stigmatized us for the last 3 decades, notably the CDC. 

I am sick, not tired.

Sincerely, Kati D, British Columbia, Canada.

Currently receiving Rituximab for this disease.