X-treme denial: #cdnhealth

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Sunday, April 7, 2013

HAWMC Day 7th: The media and ME

Today's prompt as part of the Health Activist Writer's Month Challenge is all about sensationalizing.
And I got a very good example of that with this headline that is fresh from today:
Abused women linked to higher autism risk

Sigh. Who is NOT rolling their eyes?

These kinds of articles happen all the time with myalgic encephalomyelitis. We are being portrayed by the media and to an extent, by society, as people who think they are sick but they are not.

Over the years, there has been more media coverage linking ME and CFS to mental disorders and sexual abuse as a child than decent biomedical papers. The scary part is there are researchers behind these papers who do this kind of research.

Let's take the paper above. So if you are abuse as a child and give birth to a kid (as an adult) apparently the kid has higher chances to have autism. This is just another "blame the mother" kind of paper. Just like the "refrigerator mothers" a few years back. The thing is, the autism rate is growing faster than any other diseases and there is no treatment other than behavioral for these poor kids and families.

What does it serve to link sex abuse as a child- Are they going to sterilize these people in order to prevent autism? It is not like they have looked at whether getting treatment for said sex abuse has helped reducing the autism rate. Is that going to prevent abusers from sexually assaulting kids? Hell no!

So what's the point of even funding these studies? Parents of autistic kids, they want concrete treatments for their children. Wouldn't you? (Of course I am preaching to the choir)

In the Myalgic Encephalomyelitis case (also known as chronic fatigue syndrome) there has been a very persistant team of British psychiatrists claiming that ME is caused by childhood abuse, that patients have "false illness beliefs", that the only treatments for this disease are cognitive behavioral therapy and graded exercise therapy.

Patients who have undergone these therapies have not gotten better. And it's not due to lack of trying.

See, the UK government has spent over 7 million pounds into a trial called PACE trial. The psychiatrists recruited patients with chronic fatigue, chronic fatigue syndrome and ME but pretended they all had ME. They were randomized into different treatment groups.

An explanation of the results can be found on the videos below.

In the end, the PACE trial was not designed to fail. And the investigators called it a success and said that the only proven treatments for ME were cognitive behavioral therapy and graded exercise therapy.They make a point in propagating the good news to the media all around the world.

Patient Advocate Tom Kindlon has been a fierce opposer of the Pace Trial and has written many rebuttals- if other patients with ME know links to find them, I will be happy to share it here.

And what does it mean for us patients who are sick? Well it means that governments do not want to fund biomedical research. It means that physicians want to prescribe anti-depressants and send us home. And it means that insurance companies send us for psychiatric evaluations.

Sadly even government agencies like the CDC is not immune to bullshit. Publications like these have been very hurtful and also contributed to the perpetuation that ME or CFS are not diseases worthy of biomedical research.

Nater UM, Jones JF, Lin JMS, Maloney E, Reeves WC, Heim C. Personality features and personality disorders in chronic fatigue syndrome: a population-based study. Psychother Psychosom 79:312-318, 2010.

Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves WC. Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction. Arch Gen Psych 66:72-80, 2009.

Nater UM, Lin JMS, Maloney EM, Jones JF, Tian H, Raison CL, Reeves WC, Heim C. Psychiatric comorbidity in persons with chronic fatigue syndrome identified from the Georgia population. Psychosomatic Medicine. Jun;71(5):557-65 2009.

Heim C, Wagner D, Maloney E, Papanicolaou DA, Solomon L, Jones JF, Unger ER, Reeves WC. Early adverse experience and risk for chronic fatigue syndrome: results from a population-based study. Arch Gen Psychiatry. 2006 Nov;63(11):1258-66.

And I can tell you that with each of these publications, a press release was issued and sensational claims were written sometimes on the first page of serious papers such as WSJ or NYT or your city's paper. And uncle Bob made sure to phone to make sure you read that. All of this contributed to where we are in 2013, with minimal government funding, minimal physician experts, and a whole lot of physicians who either don't have a clue or don't have the skinny on what myalgic encephalomyelitis is all about.

And I would like to end on a positive note, by sharing articles who do make a difference. The first one is from last year. Sonia Poulton is a UK journalist who wrote a brilliant piece on ME.

The second one I am not entirely sure if I referred to him as part of the monthly challenge. Llewellyn King is a journalist in Washington DC, and has become a real advocate for all patients. He's written a really fine piece about ME. Worth of sharing twice titled Chronic Fatigue Syndrome: Hidden in Plain Sight

Friday, April 5, 2013

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.

Thursday, April 4, 2013

HAWMC Day 4 – Sharing M.E. Resources

Getting the right information if you have or thing you have ME is crucial.

Here is a non exhaustive list of ressources that I consider reliable and of value for new patients and for health care professionals.

1- Find out about how ME is diagnosed and managed:

a) Myalgic Encephalomyelitis Adult and pediatric International Consensus Primer for Medical Practitioners (2012)

http://hetalternatief.org/ICC%20primer%202012.pdf

b) IACFSME Primer for physicians ME/CFS Primer for Clinical Practitioners (2012)

http://iacfsme.org/Home/Primer/tabid/509/Default.aspx

c) Canadian Consensus Criteria
http://www.cfids-cab.org/MESA/me_overview.pdf

Who are the physician experts around the world (no particular order)

a) Dr Dan Peterson, Incline Village, Nevada

http://simmaronresearch.com/

b) Dr Nancy Klimas (Miami, Fl)

http://www.nova.edu/nim/

c) Dr Andreas Kogelnik (Mountain View, Ca)

www.openmedicineinstitute.org

d) Dr Jose Montoya (Palo Alto, Ca)

http://chronicfatigue.stanford.edu/

e) Dr Derek Enlander (New York, NY)

http://www.enlander.com/

f) Dr Charles Lapp (Charlotte, NC)

http://drlapp.com/

g) Dr Kenny DeMeirleir (Belgium)

Prof. Dr. K. DE MEIRLEIR

De Tyraslaan 1

1120 Neder-Over-Heembeek

Telefon: +32(0)2 266 87 40

Fax: +32(0)2 266 87 50

E-mail: info@ehmb.be

h) Dr John Chia (Los Angeles)
http://www.enterovirusfoundation.org/directors.shtml

i) Dr Lucinda Bateman (Salt Lake City, Utah)

http://www.fcclinic.com/Dr.Bateman.htm

3- Important scientific papers as it relates to ME (in no particular order)

a) ME and Lyme disease are distinct from one another: Distinct cerebrospinal fluid proteomes differentiate post-treatment lyme disease from chronic fatigue syndrome.

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0017287

b) Chemotherapy drug Rituximab makes 67% of a small cohort better: Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358

c) Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis Are Uniquely Immunoreactive to Antibodies

to Human Endogenous Retroviral Proteins

http://wpinstitute.org/news/docs/invivo27_177-188_2013.pdf

d) Immunological abnormalities as potential biomarkers in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

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

e) A Formal Analysis of Cytokine Networks in Chronic Fatigue Syndrome

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2939140/

f) Impaired cardiac function in chronic fatigue syndrome measured using magnetic resonance cardiac tagging

http://www.ncbi.nlm.nih.gov/pubmed/21793948

g) Abnormalities in pH handling by peripheral muscle and potential regulation by the autonomic nervous system in chronic fatigue syndrome.

http://onlinelibrary.wiley.com/store/10.1111/j.1365-2796.2009.02160.x/asset/j.1365-2796.2009.02160.x.pdf?v=1&t=h959u4rm&s=8f7a5316b08e6223a57f54eecbf22b089d7ae8ea