HAWMC Day 6: Letters to Myalgic Encephalomyelitis

Today I look at my computer screen trying to express what I would say for this assignment. I am supposed to write to my disease. What would I say? 

And honestly, other than my usual angry rant, which easily comes 10 times daily, likely more, and I just don't know what I'd say to my disease. 

See, being a nurse, I understand that getting sick is basically luck of the draw. When I got sick I was an oncology nurse. I also did bone marrow transplant. I have seen health nuts coming down with cancer, and the whole spectrum of human being types that we find on earth. No matter what you are doing with your life and your health, there is a chance that you come down with cancer. After all, we have to die of something. That's the rule, even if you die of old age. You die of that. 

What I vehemently object to is having this disease that no one sees as being serious, including physicians and governments. 

I have said it before and I will say it again. I would rather have cancer, HIV, tuberculosis, leprosy, fill in the blank, than have myalgic encephalomyelitis. Most people will protest: " Nah, you don't want to have cancer, my relative so and so got it and had the most horrible experience, was in pain, etc... "

In Canada and probably all around the world, governments fund cancer and HIV more than any other diseases. And then families of the deceased give funds to cancer foundations. In Vancouver, the BC Cancer Agency, a provincial program, owns at least 3 different buildings. One is made of glass. A research program has its own building. They probably have primates over there but I could be wrong. Research happens as patients come. And then, there are volunteers to go and pick up the patients at their door steps, and take them home when  they're done. Call this valet service. The day you get cancer, you are a hero. Neighbors will bring you baked dishes and ask you if your lawn needs to be mown. 

As for the HIV program, I hear it's just about the same. Drug cocktails will be given to IV drug users. The BC HIV/AIDS program is the lucky recipient of having a world renown physician advocate, Julio Montaner, and probably just him alone brings millions for HIV research. When the government do not have money for diseases like ME, they announce millions for HIV research the next week. 

Dr Nancy Klimas is a Miami Immunologist and well known ME expert. In her early years she cared for HIV patients. Over the years she has seen the same patients getting better and better as the anti-retroviral drug cocktails got better. She says that if given the choice between having HIV or ME, she would choose HIV. 

There is something unbelievably cruel when you go to the doctor and they tell you there is nothing they can do for you, there is no specialist to send you to, because you have this disease called myalgic encephalomyelitis (they wouldn't say that, they would say "chronic fatigue" ) that hasn't been accepted by the governments and even by the medical schools. You got to be kidding me. I got sick at 39. Some got sick in their teens, and never launched out of the nest or finished high school or landed a job. They are still living at home, in a dark quiet room, supported by their parents, bedridden and unable to attend their own care. The parents are likely struggling to get respite care because government home care do not come for a disease like this. 

So all diseases are not equal, therefore all citizens are not equal. This is discrimination. 

Just for fun (DId I just say that?)  here is a list of disease and how much funding they get per patient per year. 

Disease	per patient funding Apr2010 to Mar2013	Canadians affected CCHS 2010
Parkinson	$399.49	39,000
Alzheimer	$237.71	111,500
Muscular dystrophy	$157.87	26,000
Epilepsy	$78.89	134,500
Multiple Sclerosis	$73.09	108,500
Tourette	$53.54	18,000
Crohn	$47.47	102,500
Cerebral palsy	$44.07	36,000
Diabetes	$38.93	1,841,500
Spina Bifida	$26.61	35,000
Heart Disease	$25.25	1,431,500
Dystonia	$20.26	15,500
Bronchitis, Emphysema, COPD	$9.12	805,000
Asthma	$6.90	2,246,500
Arthritis	$5.85	4,454,000
Fibromyalgia	$1.38	439,000
Chronic Fatigue Syndrome	$0.35	411,500
Multiple Chemical Sensitivities	$0.01	800,500

Note that cancer and HIV/AIDS is not being counted, as the numbers come from the Canadian Community Health Survey, which monitors chronic conditions. However I can tell you there is about 70 000 cases of HIV/AIDS in Canada. Funding is counted in billions.  

So there you got it. I managed once more to rant and be frustrated. Advocacy and doing anything is just so, so hard for patients with ME. We have cognitive dysfunction and just sitting at the computer is an effort. It is just another reason why we are so behind and not heard, because we are just too sick to just show up. 

And this brings me back to the beginning, what would I say to my disease? Nothing. I got nothing to say. 

Vancouver Complex Chronic Illnesses hires medical director

What's been buzzing in the last day is that Dr Alison Bested, who is a pathologist hematologist in Toronto has been hired to the incoming Complex Chronic Disease Clinic in Vancouver.

Dr Bested has been advocating for patients with ME in Ontario for many many years. She has also written a book. She is now leaving the Environmental Clinic, which was a diagnosis but no treatment clinic. She has been a co-author of the 2003 Canadian Consensus Criteria document.

Pamela Fayerman, a Vancouver Sun journalist who covers health, has written on the matter, and sums it all in this article, and she even quoted me:


Kati Debelic, a chronic fatigue syndrome patient and advocate said CFS sufferers welcomed Bested’s appointment.
“We wish her luck in building a clinic [that] will provide competent and evidence-based health care for the most neglected diseases of them all,” Debelic said in an email.
“Patients have been waiting for a long time for this piece of news and are looking forward to the day this clinic is finally reality. For some of my fellow patients, the wait has been unbearable.”


I hope that this turn of event is just the beginning of good care, respect, and actual treatments for patients with ME in British Columbia.

I hope that Dr Bested will embrace her role fiercely and will be able to dig us access to the laboratory tests that we need, including NK cell function, lymphocyte subset, viral titers and the latest in evidence based practices from other clinics around the world. Patients have the right to health care just like every other diseases, and patients have the right to have this disease properly researched.

So I welcome Dr Bested, wishing her easy transition to the next stage of her career.

Expectations

Patients with ME await with much impatience for Thursday and Friday April 7th and 8th 2011.  There will be a very important conference at the NIH (National Institute of Health) called "The state of the Knowledge". You can view the agenda here. Interestingly,  the conference is overbooked and some will have to watch it from a TV in an adjacent room- I feel really sorry for those who booked a flight and won't even have a chance to applaud Dr Mikovits in person.  2 of our long time advocates and also patients, Pat Fero and Mary Schweitzer have even been allocated 10 minutes each to speak. They have been part of the organization committee, which provides a certain satisfaction that patients have been consulted for this. I personally am very thankful for Dr Mangan at the NIH for coordinating this conference and dealing with the glitches all along.

It is meant as an opportunity for scientists and physicians of the NIH to network and mingle with the experts in ME/CFS and (hopefully) offer help and funding for further research. This is greatly needed, since patients with ME get 3.64$ per person, per year, in funding from the US governments (that is not counting the children). Khaly blogged about it here and the source of this information comes from Pat Fero, a long time patient advocate who lost her son to cardiac arrest at age 22, as a consequence of ME/CFS.

Yes, people die of ME/CFS. Cancer, heart problems and suicide. You can view our memorial list here. It is humbling to read through and think about human suffering.

This meeting was long time coming. In fact, the last time there might have been such meeting was in 1992... Of what I read, the agenda was much similar. (Look it up here) So, some 20 years later, nothing has changed. Our trustee pioneers like Dr Peterson, Dr Klimas, Dr Cheney, Dr Lapp, Dr Jason, Dr Hyde Dr Bell and the likes  have been ignored for 20 years, and more. Funding for this illness has been abysmal, yet the society costs of disability have been astronomical.

My personal opinion is that because the CDC has deemed this disease "benign", "psychological" and "no tests are necessary", because the CDC has stalled research and made the diagnosis definition so hard to figure out, because the CDC has deemed the illness "a woman's illness", patients are been left for dead, and left to deal with it all by themselves. The CDC has prevented research on viral causes to happen from early on, when they were called to investigate epidemics in at least 2 different areas, Lyndonville, NY and Incline Village Nevada. In both cases, the local doctors were made fun of, and after the visit of the CDC, they never heard of them again. This is criminal.

The CDC worries more about flu and an obscure illness in the middle of Africa that affects 3 people than  millions of people that have been debilitated for decades with an illness that they can't even define or for that matter, even find the right cohort for. In fact, these days the CDC is researching "fatiguing conditions" and not ME/CFS, probably a strategy to quietly exit the controversy and hot water they've been in for the last 3 decades.

So this week, all patients are expecting fireworks. Patients want to regain their lives and depend on scientists, and funding for research and clinical trials. It will be an opportunity for Dr Mikovits to explain her science, and how to find XMRV, the old fashion way. She will face Dr Coffin who is apparently a prominent retrovirologist gone bad- he decided that XMRV was lab contamination, and published many papers in this regard.

The stakes are high, at least for us, dear scientists. This is your opportunity to shine and make a difference in millions of lives around the world.

Xtraordinary

Globe and Mail article

It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS program that has been investigating false illness beliefs and sexual abuse as a child in CFS patients. 

The Globe and Mail calls these diseases "rare".  Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.

We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.

The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.

The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.

My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided?  And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.

The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province.  Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.

Since here in Canada we have socialized health care, I believe that the care that is paid by the system will  consist of medical doctors and real science. At least I hope.

X and the clowns at the CROI circus

This week had one of the most important annual retrovirology conference in the world happening, CROI, hosted this time by Boston.

CROI

HIV has been the focus of this conference forever, with crumbs left for HTLV. XMRV has not been a huge focus in 2010, and in 2011, a full 1 hour slot was reserved to discuss abstracts accepted, along with a presentation by Vinay Patak on a different  day .

XMRV: New Findings and Controversy (List of Abstracts)

For the second year in a row, Judy Mikovits was not invited to speak or even present a poster or an abstract. Nor were Dr Ruscetti, Dr Alter and Dr Lo and Dr Hanson who all can find XMRV and exclude the possibility of contamination. Judging by the list of abstract it just sounds like the conference organizers  had an agenda : ensure that no XMRV research happen in the future.

UK retrovirologist Jonathan Stoye was the  chair of this presentation. Why CROI picked him, we will likely never know. He has also been brought from UK to the blood advisory committee in December to discuss the need to ban ME/CFS patients from giving blood. He was also the chair at the September 2010 XMRV conference where Dr Mikovits was not invited either to present, and after a lot of patient protests, she was given a ridiculusly short amount of time to talk.

Stoye made a fool of himself. He fell short of science. There is no way around this.

Here are a few quotes that came out of his mouth at the most recent conference:

"And so I think it's fair to say that the initial report of an association with CFS and XMRV has not yet been replicated. There is one paper, namely that by Lo et al, which it has been strongly argued is a support of the idea that a murine leukemia virus like virus is involved in CFS, however I'm not convinced by that paper, I'm happy to discuss it later on, but I don't think that that can be taken as positive evidence to confirm the study by Lombardi et al. So, not only has XMRV not been found in CFS patients, it has not yet been found in anything like the original 4% figure in control populations, so there's now considerable doubt about whether this virus is associated with XMRV "

"I predict there will be less and less interest in XMRV and association with disease."

Dude, this is what you wish... because you can't stand seeing someone other than you being able to find a retrovirus that will revolutionize the world of patients that were (and still) thought of having a psychiatric illness. This is called professional jealousy. So if I can give Stoye an advice, spend more time in the lab, culturing and not focusing so much on the PCR, and much, much less time talking with the boys in the retrovirology circuit.

And a last one, really precious... 

"I can talk about an anecdote among urologists in Britain. They were suddenly alarmed that the cell line they’d been using was loaded with virus. I think there are some of us who’ve been working with XMRV or related viruses for, well I’ve been doing it for 35 years or something and I know I’m negative. Or at least I was the last time I looked. "

Stoye may want to send his sample to VIP DX in Reno, because retrovirologists in UK can't find XMRV. 

A second topic of controversy is the comment made from Dr Jeanne Bergman, in the audience, from AIDS truth. Dr Bergman, if you google your name you will read this. The ME/CFS patients deserve an apology. 

" There is a curious correlation between people who don't believe in the existence of HIV or don't believe that HIV is pathogenic and people who do believe that they are infected with XMRV and some of those people, who have actually got AIDS like symptoms are taking ARVs, not for their HIV but for their XMRV. It's absolutely fascinating and I hope some day someone will write it up"

I have only been ill for 2 years, which is not long for the average ME/CFS patient. 10 years or more of being housebound or bedbound is fairly common. There are people in nursing home. Most patients have not even been diagnosed, or gotten appropriate treatments. For the lucky ones that got Ampligen as part of a trial, and improved, it was just too cruel to deny them the drug that allowed to get their lives back. What I can say, is if there is a small chance of me recovering enough to work out, go back to work, travel and enjoy life again, I would take whatever would make me recover. May it be antiretroviral, 

Ampligen, Rituximab, or others. I would also risk to be the placebo in a double blinded clinical trial. I would move across the country for treatment. It would be better than being judged by doctors that don't know squat about the disease so ironically called Chronic Fatigue Syndrome.

And lastly, the conclusions from the panel including Bill Switzer and Stoye, that XMRV is an infectious virus, but not related to ME/CFS and that lab workers should be tested for it. But remember earlier on he said that association with disease will generate less and less interest. 

The absence of Dr Judy Mikovits, Dr Ruscetti, Dr Hanson, and others have left the patients very upset since the CROI conference presented a very unbalanced view of the state of XMRV research. But just a few days later, we learnt that all this nice people, AND Dr Luc Montagnier, one of the co-founder of AIDS, were in South Florida discussing the real matters, Ampligen and the retrovirus. You can see the article here.

That news, and many many recent  positive articles in the New York Times and Washington Post revived the morale of the troops

Amy Dockser Marcus, WSJ, March 5th 2011

Leonard Jason, WSJ, March 5th 2011

. 

David Tuller, NYT, March 5th 2011

We can only move in the right direction from here. There should be news from serious studies, including one that have happened in Calgary, Alberta.

X-tra proteins?

For starters, check this out:

Dr Klimas says she has been filmed for 2 hours for just about 10 seconds of air time. The big news is a research that came out yesterday announced the presence of proteins in the spinal fluid of CFS patients that is not present in normal controls.

Funny that it came out less than a week after the psycho study huh?

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome By Dr S. Schutzer et al.

Essentially, Dr Schutzer found proteins in the cerebro-spinal fluids in CFS patients that are distinct from chronic lyme patients and healthy controls, including some complement proteins, associated with inflammation. This means that we can tell scientifically that ME/CFS is real, and it is not an imaginary illness.

Well we knew that... We just had to let the scientists prove it. Of course more studies are needed. I hope they hurry...

In the meantime, one of our fellow patient Charlotte von Salis attended an education day at the National Institute of Health, it was a presentation by 3 doctors, Dr Shih-Shing Lo, Dr Harvey Alter, and Dr Fred Gill. You will be able to find the video cast here  when it gets available for the public. It was only available to NIH people, but Charlotte has been able to attend and blogged about it, and one journalist/blogger Mindy Kitei hosted the blog post here here

What I have to say about it, and I won't be shy, is what the hell, NIH, what were you thinking? Mindy, in the comment section, said "The answer to who picked Gill is that Tony Fauci is ultimately pulling the strings, and Dr. Fred Gill is just the latest patsy." Dr Fauci is a long time accomplice in keeping chronic fatigue syndrome in the shadow and keeping the disease classified (unofficially) as a psychiatric disorder. He is at the head of NIAID (National Institute of Allergies and Infectious Diseases) and has quite a large budget to manage, but won't share any of it with the CFS program. Anyways, it sounds like Dr Gill's presentation was as atrocious as the slides that we have been able to view before  the presentation:

Dr Gill's slides

As a comparison, you can view the science as viewed by Dr Lo and Alter through their presentation at the same education day:

Dr Lo's slides

Dr Alter's slides

Patients with ME/CFS needs to know what is the agenda of the NIH and NIAID and why they perpetuate the corruption, discrimination and bad science of 25 years since the epidemics of the 1980's. ME/CFS science proved through 4000 papers that the disease is not psychiatric. There was a great opportunity this week to come clean and dispel the myths. So why inviting a doctor to spread more psycho-babble through the world, when XMRV has been twice linked to patients with CFS and abnormal proteins have just been found in the spinal fluid of patients ?

The psych lobby is playing big cards, almost desperately it seems, just the same way a husband is trying to hide a mistress. It ain't working. There are traces everywhere, and it's not perfume! The psych lobby group, the CDC, the MRC (Wessley school) have committed crimes to humanity. It's about to get uncovered. In the end, science always wins.

I will leave you tonight with another goodie from Hillary Johnson, a genius piece called Hey, Lazy Arses!