Friday, January 21, 2011

Will they hear our whisper?

This is my story but this is also the story of some 240 000 + human beings in Canada who have no medical care. There are 17 millions of us around the world. 

My story

I got ill in November 2008. I was working as a nurse and had to leave in the middle of the day with severe flu like illness. My manager was not impressed. 

10 days later, still the same flu symptoms but no upper respiratory tract infection. My doctor tested me for Epstein Barr virus, it was positive. (acute mononucleosis). I am 41. 
Employee health told 4 weeks off work and then I would be brand new and ready to go back to work. Unfortunately I didn't fit that mold. I tried twice to return to work but it was too hard. Then I got hit with a bad case of gallbladder issue, curiously without stones, and got hospitalized for 2 weeks. And everything got downhill after that. 

I was expected to recover for 8 weeks after surgery and then return to work. However I had really strange symptoms 4 weeks after surgery, and my recovery really stopped. I was having a hard time being upright, I was dizzy even sitting up, let along standing. And then I was terribly sun sensitive. I had perception problems, making driving quite dangerous for a week or 2. I couldn't make sense of all these symptoms and my doctors thought I was faking and that I didn't want to return to work. She wanted to give me more anti-depressants, saying this is how you get treated. 

In September 2009 I started having chest pains and shortness of breath and the doctor did nothing. A month later I still had symptoms and then I was sent for testing after expressing deep concerns for my care. My doctor had for idea that all my symptoms would go away by themsleves. I had to go through a functional assessement for my disability insurance which involved 2 days of tests to see if I was apt to return to work. The tests are not even showing how sick I am. After 2 days, the physio thought I should get intensive physiotherapy for 6 weeks, and then quickly go back to work. However just one day after testing, I got generalized joint pain and general relapse of all of my symptoms, and more, that lasted for 3 months. This is the nature of our illness, and not many believes us. 

In January after waiting for 7 months for a rheumatologist appointment, I was told by the doctor she didn't do chronic fatigue syndrome within the first 5 minutes of the interview. I then saw an infectious disease dr at St Pauls hospital, who ignored my 4 months cough- and had nothing to say about my illness or possible infectious etiology. 

That is when I knew that there was no health care for me in British Columbia. Having worked with cancer patients has not helped me understanding this truth, because honestly, cancer patients get world class care. Everything is taken care of for them, from financial issues, to emotional coping to driving to and from treatment and appointments, from as far as Hope, by volunteer drivers. You get all the treatments that you need and if you want to be treated till you die, so be it, our very generous health care system will pay for the very expensive drugs. 

In June 009 I went to see Dr Nancy Klimas who is one of the very few specialists in chronic fatigue syndrome- or ME- in the world. She has worked with AIDS patients, Gulf War Syndrome patients and works at the university of Miami as an immunologist. In the spring I had the rheumatologist to apply to the government for out of country health care funding, which was denied to me for the reason that Dr Klimas' treatments were experimental. Dr Klimas, while being a researchers and writing papers, has seen and treating patients with ME/CFS for the last 25 years. She diagnosed me with an autonomic nervous system disorder called POTS (postural orthostatic tachycardia syndrome) ad got me started on medicine including atenolol. My family physician- and the ER physician- didn't even know what it was. And it explained my chest pain! Dr Klimas also assessed my immune system and virus reactivation, which happen with this disease. And it ends up that I have immune abnormalities, viral reactivations, all related to the ME/CFS disease. She recommended I get prescribed Immunovir, a drug that aims at strengthening the immune system. Interestingly the drug is not approved by the FDA, but there is a pharma company in Canada that gets her prescriptions, and then the pharma company contacts the patients in the US and it gets sent to them directly. For Canadian patients, it doesn't work that way. Since it is a prescription drug, it must be prescribed by a canadian doctor. No doctor wants to prescribe it to me, my family doctor says she is worried of getting in trouble because of it, and 2 of her colleagues have told her not to. The infectious disease doctor didn't want to prescribe it either. There are almost no known adverse effects associated with the administration of this drug. 

Subsequently to my appointment in Miami I saw a respirologist (and after 11 months of serious coughing was diagnosed with asthma) an immunologist (who thought that Dr Klimas's testing was just like a big fishing expedition), an ENT, I had a sleep study, and a notice from my disability insurance company that they were stopping my disability benefits because I haven't been able to prove that I am unable to work. In their letter they explained that my skin, head, ears nose and nails were "fine" therefore I should be able to return to work. To this point, 15 months after getting ill, I am still getting no treatment at all, and no recognition that ME/CFS is a real illness. When I tell people that I'd rather have cancer- it's because cancer patients have a status in the society. They are ill. They get respect. 

Patients with ME (the name chronic fatigue syndrome is insulting and misrepresenting to the patient community) have no voices. A lot of them are not strong enough to fight for their rights, and some of them are not even able to attend to their most basic needs. Some of my online friends have been bedridden for 20 + years. They have never been able to work marry, have children. A lot of the misconceptions of ME/CFS lies to the facts that it is a woman's disease, and that it's a psychiatric illness. Even the CDC, center for disease control wants to give the impression that CFS is not a serious illness, by propagating poorly constructed research (association of ME/CFS with sexual abuse as a child, making sure that no physicians tests patients for viral reactivation or for nervous system abnormalities) 

The story with the CDC

When our doctors need to find information they don't know about a disease or condition, they refer themselves to the CDC website. If you need information about HIV you might be in luck. However when it comes to chronic fatigue syndrome, it is a disaster. Here is the story,  as told by the author of Osler's Web, Hillary Johnson (Osler's Web). In the mid 1980's  2 internists from a small village of Incline Village near Reno Nevada, found that over 200 people were found to have a severe flu-like illness but never recovered. They were worried and called the CDC to investigate the epidemics. The CDC sent 2 junior epidemiologists that seemingly were more interested in casino and outdoor ventures than meeting with patients. They reported back to the headquarters in Atlanta with the conclusions that both patients and doctors were "hysterical". The same kinds of cluster outbreaks have been noted in the last few decades, but this time around the CDC decided to call it a different name-  and to downplay the severity of the disease called it chronic fatigue syndrome. The story of the CDC with CFS is long and complicated, but suffice to say that they have been guilty of using the government funding for other things than researching CFS,  and very little has been accomplished in terms of biological illness. In fact, the CDC researches the psychological aspect of "chronic unwellness" and finds their cohort subjects by random telephone calls asking if any of the members of family has been fatigued over the last 6 months. The CDC has been known to "diluting" the CFS definition criterias to include depressed patients, which in turn skew the scientific research and cheats the patients of adequate care. To this day the CDC website tells all the physicians in the world that CFS is treated with cognitive behavioral therapy and graded exercise therapy, amongst other things, and anti-depressants.  They recommend not to investigate the disease through viral testing or neurological testing unless it is to rule out other diseases. 

XMRV and links with ME/CFS

October 9th 2009 begins a new odyssey for millions of patients with ME/CFS. The most reputable scientific journal on the planet, Science, publishes a paper from a small research institute in Reno Nevada, with Dr Judy Mikovits at the helm, and announces a link between CFS and a new retrovirus called XMRV, which has been found some 3 years before with patients with an aggressive type of prostate cancer. 

In this research, 67% of CFS patients tested positive for the retrovirus, using several methods of detection, compared to 3.8% in the healthy controls. Later Dr Mikovits said that they found XMRV in 98% of the patient population. 3.8% of the healthy controls means that a retrovirus is circulating in the general population without giving symptoms to the carriers. It also means that these people give blood and that likely this retrovirus is present in the blood supply. 

There are only 3 retroviruses to be known in the human specie: HTLV, which can cause leukemias and lymphomas, HIV and XMRV. 

Retroviral association with chronic fatigue syndrome is not new. Physicians implicated with the early outbreaks in the 1980's had suspicion of retroviral infection especially because they would see viral reactivations- which also happens with HIV. But with the lack of research funding, lack of interest for a disease called "chronic fatigue syndrome" and more than often mockery of the medical body, research did not happen. Dr De Freitas, a scientist in the US found a retrovirus of another kind in the early 1990 but this claim was refuted and quieted down by the CDC who refused to visit her lab in Philadelphia.

The Whittemore-Peterson Institute arose from the ground, litterally, out of love for a daughter. Mr and Mrs Whittemore have a daughter who got ill at an early age and were very frustrated with the lack of health care, the disbelief from the doctor that their daughter was really ill, and decided to fund an institute to find the answers not only for their daughter but also for patients just like her who never got answers as of why they were ill and how could they be treated so they could go back to a normal life. Dr Peterson is one of the doctors from the Incline Village epidemics, who worked relentlessly at trying to find out a cure, and they found a key researcher, Dr Mikovits to help them with the science part. The WPI has been (don't quote me on that) entirely privately funded.

Whittemore-Peterson Institute

After the Science publication, a few studies tried to replicate this study but the attempts were very weak, with trying only one method and not selecting the patient cohort carefully. Patients also noted that psychiatrists were leading these researches, especially in the UK and Netherlands where ME/CFS is viewed as a psychiatric disease and treated the same way multiple sclerosis patients were once treated a few decades ago, as "hysterical".  Patients still to this days get hospitalized in psychiatry and denied physical care and left soiled because they are unable to go to the bathroom by themselves. The CDC attempted such replication study, and despite being given 20 positive samples by Dr Judy Mikovits at the Whittemore-Peterson Institute, they found no XMRV in their patient cohort, and no XMRV in the control. 

But 2 scientist groups joined efforts to do a good replication of Dr Mikovits' study, and in August 2010, Dr Alter from the National Institute of Health and Dr Lo from the FDA published a XMRV study finding XMRV in 87% of their ME/CFS patients and 7% of blood donors. They published in PNAS, another very reputable scientific journal. 

Still to this day, scientists are going to war with this, the nay sayers claiming contamination with mice DNA. Dr Mikovits and the scientists that found the retrovirus stick to their guns, saying that the retrovirus is hard to find- it is small and present in low copies unlike HIV. However HIV was also difficult to find in the early years and its discovery was also enmeshed with political, ethical and moral issues. 

The patients

While the controversy continues on the science side, patients are waiting. Some have been in bed for decades. Some didn't quite make it and chose to end their lives. Some children with ME/CFS have been removed from their family with accusations of munchausen by proxy. 

1/3 of the patients from the Incline Village epidemics developed a rare form of lymphoma called Mantle cell lymphoma and other blood cancers. Patients also die of heart diseases. We will never know the human toll from this diseases because rare are the death certificate that mention ME/CFS. 

With the increasing possibility of networking in your own bed, patients have gathered on social networking sites. However advocacy for yourself, when you have trouble cooking, showering or even communicating is really difficult. Stress is known to exacerbate the symptoms and can easily induce a relapse that can set you back weeks if not months. Patients have no voice. Isolation over time, loss of friends and family members, and inability to make new ones only make it more difficult to reach out and fight back just the way HIV patients  fiifighted in the 1980's. Since disability insurance is incredibly difficult to get with the lack of support from the doctors and the lack of biomarkers, patients face poverty and financial disasters. However in December, monies were raised by patients to fund an ad  in the Washington Post warning the populations of this new retrovirus, because the alarm has not been rung. Research funding is still less than most diseases for both the US and Canada. When cancer and AIDS and diabetes get hundreds of millions , if not billions in funding, ME/CFS got 5 millions last year in the US and less than 1 million in Canada for the last 10 years!!! 

According to Statistics Canada, there was over 240 000 patients with ME/CFS in 2003. This number is astronomical to me, knowing how un-educated our physicians are about the disease. Not all doctors are aware of the new retrovirus. 

Patients have taken in their own hands to send their blood in the US to get tested, and therefore seeking validation to what ails them. As for treatments... we are still hoping. A study coming from Utah by Dr Singh has found that 3 anti retrovirals have proven to be effective IN VITRO against XMRV. AZT, Raltegravir and Tenofovir. Some patients have convinced their physicians to prescribe these drugs for them, because there are no clinical trials to date and they feel that it is their only chance to get better. 2 physicians with MECFS and XMRV are taking these drugs, one is blogging about it and sharing her experience. 

A patient's father has suddenly become a patient advocate and share his thoughts on the politics of the illness  and how difficult it is to see a loved one suffering: 

And a patient with XMRV, university professor, sharing her thoughts as a patient : 


  1. What you said about cancer patients needs to be said and heeded. The disparity of care is... well, sickening. I once went to a social service agency and the intake person turned out to be a cancer patient who gave me an attitude like, YOU have nothing to complain about, look at ME, I'M a CANCER survivor. Sure, cancer patients need great care, but so do we. And many of them have high chances of walking away cured in a short time. As for us, here we lie.

  2. Great blog kati!!!
    People need to read this now
    See also whittemore-Peterson institute. Hit for more info.
    Hugs kati! Sas

  3. Well done for joining this special international XMRV blogging day! Very interesting to read about the problems with this in Canada. One of my on-line Canadian friends with ME took her own life last year; sadly this is not unusual. I wonder how many people with cancer feel so hopeless that they also take this way out? You are absolutely right to point out the differences in treatment.

    My only question is to ask whether you have considered going to see Dr Byron Hyde in Ottawa?

  4. Sadly dr Hyde needs 3000$ the day I send my filled questionnaire. The wait time was 18 months to 2 years. I didn'feel it was such a good deal. the wait time for Nancy's clinic was 6 weeks.

  5. thank you all for your great comments!

  6. Kati: This is great! Great personal story that gives insight into what happened to you and how the Canadian health care system has failed you. Big changes are needed in Canada (and the US/UK,etc).

    Thanks for writing this blog. It is super great and gives a ton of useful information that I can direct others too. Hugs - Sarah

  7. If the retrovirus turns out to be the cause, the WPI scientists deserve the Nobel Prize.

  8. Thanks for sharing your story as well as the politics of ME/CFS and XMRV.

    Like Nicky, I, too, was a friend of the woman who took her life after 20 years of ME in BC, Canada. And I have a friend whose daughter lives in Canada. I know how hard it is to get any care for our disease in your country.

    I'm glad you have Klimas in your corner. She and you are such fighters. I'm sure you'll come through this!

  9. Thank you Laurel and Liz, and Tina, I totally agree.

  10. well done Kati, lot of work in short time, nice clean new format blogger has ..... have to lay flat :) Go Girl!! hugs

  11. Thanks for the explanation re Dr Hyde. Such a shame that he's not been able to bring in other doctors to work with him and expand his practice.

  12. I hate that it is so hard to find doctors and get treatment. {{{hug}}} Thank you for helping spread the word for the need for research and funding! So thankful that WPI has risen to the call and is helping us find real hope and answers for ME/CFS!

  13. Thank you so much for this post...I can attest, as many of us can, to the complete shock that comes with such a life-changing diagnosis. One day, you feel relatively healthy - "I'd LOVE a full night's sleep", "I need a vacation!"...the typical complaints of healthy life. Then BAM!, you've got a disease, and your life will never be the same. It certainly changes your outlook on life, your priorities, and your perspective on things. I've found that healthy individuals all too often take for granted their good health, and don't seem to realize how quickly the rug can be pulled out from under them. Also suffering from disease-related disabilities, I was fortunate enough to have been prepared with Long-Term Disability insurance, so I was more prepared than I think those who feel invincible are.
    Anyway, thank you for sharing your story! Sending good vibes your way :)

  14. Thank you Master Shake. it takes a few yeqrs to get adjusted to the fact that you are ill and not only drs know nothing about our illness, but they often have prejudice and misinformation.Certainly my plans have been paused for now, with the hope that one day, I can be active again and. Able to return to my priot interests.

    take good care, Kati