HAWMC Day 15: On being inspired.

Today I am detracting a bit from the prompt provided by Wego Health. The topic seemed to require way too much energy and cognitive work, which I don't have. See, reading is require concentration and memory. In contrast, writing requires thinking but that is much easier these days, not that I necessarily do it well, but I try.

Today’s Prompts:

• Comment! Pick someone else’s blog post and write a comment to them. Write that comment as your post for today and link back to them to let them know you were inspired.
• Participate in our guest post swap day. Email us (editorial@wegohealth.com) by April 8th to be paired and we’ll connect you with another Health Activist.

So instead I am sharing a story that is likely to inspire others. It offer a lessons in not giving up and on thriving and helping others despite adversity.

Meet Spencer West, a fine young man who was born with un-usable legs- and got them amputated at age 5. While doctors told his parents at birth that he would be severely handicapped, and that he would never have a productive life, it was not Spencer's plans to do just that.

I don't want to tell the story- some have told it better. I am attaching links to articles and videos. Be inspired! Pay it forward. Nothing is impossible.

Enjoy!

What drives Spencer West? (Look up for additional videos on the right side, they are worth it)
Finding inspiration and encouraging others despite huge disability
Additional You Tube Video

HAWMC Day 14: Myalgic Encephalomyelitis Activist Heroes

M.E. Activists are a special kind. As patients, as if the illness wasn't harsh enough, we face stigma and government who do not get impressed quickly. And as non-patient, it takes much dedication to fight an impossible battle.

Today, I would like to highlight and thank 2 special M.E. activists who have been going the distance for all patients in the last few months.

Robert Miller is a long time patient who has taken on to speak up and walk the walk, so to speak. He has been receiving Ampligen on and off, a drug that has been stalling in clinical trials for over 2 decades. Just recently, the FDA refused approval of Ampligen once more, a blow for patients who have been helped by this drug and who have relapsed when off it. Robert has been fighting fiercely, literally risking his life by starting a hunger strike in order to get his voice heard on our behalf. Last news I heard about him he was in Washington DC for meetings with government officials.

Robert, I want to thank you and command you for your efforts. They do not go unnoticed. You are a hero! Bob is on Twitter: @bobmiller42


The second person I would like to highlight is journalist Llewellyn King, whose resume is quite impressive, and for fear to leave any important bits behind, I am copying from his White House Chronicles website, available here:

Llewellyn King’s long and remarkable career in journalism began in Southern Rhodesia (now Zimbabwe), where he was born and raised, as a 16-year-old foreign correspondent forTime, UPI and two London newspapers, The Daily Express and The News Chronicle.

Before starting his own publishing group, King worked for a pantheon of British and American media outlets. As editor in chief of The Energy Daily, King Publishing Group’s flagship newsletter, he became renowned for his incisive reporting and commentary on the energy industry, and for his public speaking panache.

In chronological order, here is how King’s career has unfolded:

London: Executive, The Daily Mirror Group; reporter, Associated Newspapers; scriptwriter, BBC and ITN

New York: Assistant editor, foreign desk, The New York Herald Tribune; founder, Women Now, a monthly magazine targeted to emerging businesswomen in the 1960s

Baltimore:Copy editor and feature writer, The Baltimore News-American

Washington, D.C.: Assistant foreign editor, assistant travel editor and culture editor, The Washington Daily News; assistant editor, The Washington Post; Washington editor, McGraw-Hill’s Nucleonics Week

Founder, publisher, editor in chief, The Energy Daily; chief executive officer, King Publishing Group, whose award-winning newsletters, almost all of which he founded, included The Energy Daily, Defense Week, Navy News & Undersea Report, New Technology Week, Food & Drink Daily and White House Weekly

Host, “The Bull & The Bear” on the GoodLife Television Network and Jones Television

Founder, executive producer and host, “White House Chronicle” on PBS; regular contributor, Voice of America; contributor, CNN, C-SPAN, PBS (“The NewsHour with Jim Lehrer”), NBC (“The Today Show,” “Meet The Press”), Westwood One (“The Jim Bohannon Show”), American University Radio (WAMU 88.5) and RTE (Ireland’s national radio and television broadcaster)

Regular commentary contributor to McClatchy newspapers; occasional contributor to newspapers and journals, including London’s Financial Times; and nationally syndicated columnist, North Star Writers Group

Author, “Washington and the World: 2001-2005” (University Press of America, 2006)

Stevens Institute of Technology awarded King an honorary doctorate in engineering, for his contribution to the public understanding of science and technology.

King has given more than 1,500 speeches, organized more than a thousand conferences, and traveled to over a hundred countries.

Mr King has a dear friend suffering with ME and decided to learn more about the disease and to get involved in the best way he knew, through journalism.

Mr King produced (and still producing) a serie of videos called ME/CFS Alert. They are short interview with physicians who treat us, researchers and even patients.  And more recently he has published a very touching piece about ME called Chronic Fatigue Syndrome: Hidden in Plain Sight and very worthy of your time.

Mr King, I cannot thank you enough for speaking up on behalf of millions around the world. You too are a hero.

HAWMC Day 13: A short poem

My disease sucks
Enormous stigma
Care, what care?
For governments refuse to fund research
So we are going nowhere.


(ME/cfs stands for myalgic encephalomyelitis, also known as chronic fatigue syndrome) 

HAWMC Day 12: What I have learnt as a patient

I have been a nurse for nearly 20 years when I got sick in 2008. What I knew then about our socialized health care system was that everybody was taken care of.

See, I worked in labor and delivery. Women came in labor with their birth plan, they gave birth and they sent us candy. Happy moments, for the most part but not always. But everyone got served and got cared for. In fact, if there was no room for them to have a baby, they'd be diverted to another hospital, and occasionally even in the US, and our health care system would pay the tab.

In the latter part of my career, I worked in bone marrow transplant, then in an outpatient chemo unit. Oncology is health care on steroids. You need a MRI this week? You got it. It can take up to a year for non-cancer patients. One of the rare PET scanner resides at the cancer clinic.

You could see opulence in that hospital, thanks to private donors and public funding. Patients are well taken care of, for all of their needs. The nurse to patient ratio is high in every parts of the hospital. I made sure my patients were comfortable and well taken care of.

And then I got sick.

Throughout the 4.5 years I have been sick, I have learnt that not everybody is treated equal when it comes to health care.

The name of your disease matters. See, if your disease is called chronic fatigue syndrome, you are out of luck. Whether your diseases belongs or not to a medical specialty matters. Whether your disease belongs predominantly to one sex matters. Women's diseases are not served as well as diseases such as cardio-vascular, erectile dysfunction or sports injuries.

I have learnt that specialists do not want to treat patients outside their medical specialty, especially when it comes to chronic diseases. I think they get worried of getting stuck with us.

I have learnt that governments are not interested to fund myalgic encephalomyelitis, especially since it's been branded early on as a psychiatric illness (which it isn't) and that they'd rather fund diseases that makes them look good. It doesn't make sense. You can only understand this when you get sick with a wrong side disease.

I have also learnt, in no particular order
- to not believe everything that is being said out there.
- to not trust every scientific paper as being the absolute truth
- to trust your instincts and stick to your guns
- to take one day at a time
- to not expect instant results when advocating for your disease.
- listen to your body
- be nice to yourself
- keep distracted, keep your brain busy
- have a copy of your medical records

- don't forget to laugh. 

HAWMC Day 11: Chronic illness and Social Media.

Following the epidemics of ME in the mid 1980's, thousands found themselves housebound and bedbound, isolated, and with very little way to find likewise people to share experiences. Gradually support groups developed, but the housebound and bedbound were left behind.

Then came the world of internet. While it took at least a full decade to get patients connected, there is a wide variety of internet ressource, communities and social media available. Of course the very severly affected are unable to participate due to sensory overload.

While Facebook provide a great venue for mingling and provide support amd sharing of information, today I want to discuss the power of Twitter and what it can offer patients especially when it comes to advocacy and activism.

The most important features of Twitter is that nothing is private, except private messaging of course. In thhe light of advocacy, it's a good thing. When you send a tweet, it gets queued in all of your followers's feeds. This means that having a lot of followers is helpful in order to make the most out of Twitter. You can also expand who reads your tweets by adding someone or a geoup's handle, or by using the hanshtag sign #.

Briefly, the hashtag is used with keywords that are searchable on Twitter. For example, #mecfs or #fibro. #spoonie is used for all patients who have a limited amount of energy to live with. It encompasses diseases like lupus, rheumatoid arthritis, ME and FM, amongst others.

For an exhaustive list of commonly used hashtags in health care, please visit this link. It is best to use the most common hashtags to increase the chances that your tweets will be found and read. Also of interest for health activists are the hashtags used by and for journalists and politicians, medical and research organizations and government agencies. In Canada, #cdnpoli, #hcsmca and #cdnhealth are the main ones.

Tweet chats are also a great opportunity to mingle, bounce ideas and network. I find that using this link is a very good app for that purpose. There are all kinds of topics and schedules available here. If there is a big turnout, it can get a bit hectic and hard to keep up with the flow especially when one has cognitive dysfunction. I found that participating in more general tweet chats has allowed me to see a bigger picture, beyond my own illness. I have also been impressed with the variety of backgrounds in people showing up, and the moderators are usually very good to keep on topic.

To conclude, Twitter is a great tool to use, in my opinion, by all health activists.

HAWMC Day 10: Wordless Wednesday.

I miss my old me. 

HAWMC Day 9: On caregiving

Today's post is about caregiving. We are being asked to discuss what advice or tip we have for caregivers.

This is troublesome because other than my trustee cleaning ladies, I have no caregiver, and no one that looks after me. I am alone.

See I have always been the independent one. I left home for college at 18, and made do. I took on solo trips around the world with my bicycle and everything but the kitchen sink. I worked hard as a nurse, at first in labor and delivery and then with cancer patients, including bone marrow transplant. I enjoyed the one to one kind of nursing, building a rapport with my patients and giving all that I had.

And when illness hit at age 39, I was excited about my new goals, I still wanted to travel and bike, and on top of my nursing career I wanted to be a photographer. But then I got sick.

So here I am facing a chronic illness, a beast if you will, alone. Speaking of convenience, well, the fact that this illness is mostly worsened with all kinds of stimuli including light and sound, being alone is indeed convenient. I control the noise level, most of the time it is silent, no TV and no radio and my bedroom is as dark as a moonless night. I get by with my self care by carefully pacing and planning my activity and energy. When I feel terrible, I take the electric cart at the grocery store, and shower less often. I cook just a few times a week, and live off leftovers or frozen meals, or salads quickly put together. Should I get sicker, I can get my grocery delivered.

So caregiving from my point of view as a sick person with one of the most neglected diseases, is coming from my phyisicans. There has been some very good and some very bad. There is still some very good and some very bad.

Here are a few pointers for health care professionals dealing with a patient with myalgic encephalomyelitis. These very simple measures will help you connecting with your patient. You will do some good.

- Respect what your patient is saying. Believe him/her. If they say they need a wheelchair and cannot walk 20 feet, believe it's true. And if they even could, they are saving energy so they can talk to you.

- Listen to what your patient is saying. By listening, you are allowing healing to happen, and you can also get important clues as of what needs to happen next.

- Learn about myalgic encephalomyelitis (or to an extent, any disease that you are not familiar with). You'd be surprised to find out it is a complex and neglected disease and that the symptoms go beyond being tired.

HAWMC Day 8: The elephant in the room.

If myalgic encephalomyelitis was an animal, it would be, without a doubt an elephant in the room.

The elephant in the room specie is larger than life yet very seldom recognized as such. It is commonly found in government offices and where funding decisions are made in each country.

Elephants in the room are unfortunately not endangered species and its thriving is due to the lack of knowledge from decision makers, lack of research funding, bad decisions from leading groups like the CDC, diluting the disease case definition and the neglect from the medical field, amongst other things.

You'd think that elephants in the room are big enough to be seen and be loud enough to be heard. Perhaps the people sitting in board rooms and parliaments are blind and hard of hearing. Occasionally one of them will venture their hands out and feel a body part of the elephants in the room, and think: Oh yeah. I know! Fatigue is like when you come back after a hard day at work and then you got to take care of dinner, laundry baths and bedtime for the kids. Then another one would touch another body part and think- oh I know what it is. This is an overweight creature- a little diet and exercise will cure them of what ails. And then another one will say: there is nothing wrong with this animal. Maybe it needs a little therapy.

The uninitiated needs to take a look at the whole beast. Most people with chronic diseases, many of them very debilitating, are invisible to the eye. Myalgic Encephalomyelitis also suffers with the fact that there are no biomarkers for the disease and that most physicians still don't know how to diagnose it, but then a handful of chronic diseases are based on clinical expertise, namely Parkinson's and rheumatoid arthritis. These 2 diseases have or can have visible signs which is not the case for ME.

It's now been just shy of 30 years that there has been epidemics of ME around the world. The elephants are still in the rooms of governments who refuse to say there has been gross incompetence in recognizing and studying these epidemics. Since then, the elephants have been accumulating like crazy, so much that it's hard to breathe and yet, the people in suit in our governments are still congratulating themselves for giant leaps for HIV. What about the rest of us?

I want to think that we'd be in a different world if ME was handled how HIV has been handled over the last 30 years.

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

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.