In recent years, I have taken an interest in a little understood disease of the immune system known as Chronic Fatigue Syndrome or Myalgic Encephalomyelitis, its global name.
I became interested in ME/CFS through my friend Deborah Waroff, a colleague of the 1970s, who has been a virtual invalid for 23 years – her dream-like life confiscated by a disease no one understands, without a recognized diagnosis, no cure and no effective treatment for the symptoms.
ME/CFS symptoms include joint pain, migraine, cognitive dysfunction and sensitivity to light. Physical exertion is often followed by immediate collapse. Interestingly, most patients remember the exact time and location of their initial attack.
Many sufferers are housebound, like the author Laura Hillenbrand, and go through months and years of being bedridden and unable to tolerate light. Suicide is common.
Women account for at least two-thirds of the 1 million victims in the United States and 17 million worldwide. Yet ME/CFS has no lobby in Washington, no celebrity spokesperson, gets next to no media, leaving the sufferers to feel cursed, hidden in plain sight.
The only blessing in these unblessed lives may be the Internet. It is their line to the larger, happier world and the source of strength through shared experience among the afflicted.
Together with Deborah, I started a YouTube channel of interviews and observations that also has gained world viewership. The channel is called mecfsalert.
Recently, I asked mecfsalert viewers to tell me how they get through the day. Do they cope with a prayer, a mantra, an effective diet, scents, music or reading (for those who have enough energy to do it)?
Their e-mailed responses have been pouring in. Friends and loved ones -- even Internet friends – are very important, followed in many e-mails with pets:
Hazel Quinn writes of her comfort: “My cat. She waits until she hears me stir; she will be so happy, and will come over and purr. When she comes in from outdoors, I smell the outside on her fur. I can tell what is happening outside by what she has ‘collected’ such as rain, smoke from peoples’ fires, moldy smells from dank piles of old leaves and undergrowth, even cow poo at the end of her very furry tail (I live out in the country).”
More about cats comes from Sue Howley: “I can say the biggest lift for me in recent weeks has been the introduction of two cats into my home. Although I am fairly functional and can look after myself, I still have to spend a lot of time indoors doing not very much. Having the cats around has been wonderful, as it gives me the role of carer and makes me feel of value. When I am resting, having a cat snuggled up, purring away, sharing the snooze, is so deeply relaxing. Simply watching them play together always creates the sense of a smile in my heart. ”
May McGrath, who lives in Nottingham, England, is severely disabled and needs constant care. She writes: “I got ME suddenly in 2008, age 23. I was at work and the left side of my face went numb. It was a virus that affected a facial nerve. I went home and the rest is history. The little things that get me through the day are: my huge rescue dog, Digby; my cat, Bear, who sleeps on me; and my rabbit, Cookie, who loves hugs and kisses.”
McGrath adds that it helps her enormously if people preparing her breakfast and lunch take care with the presentation. “It really cheers me up if they make it look appetizing, and remember the extras like fruit and a bit of chocolate. It can literally make my day.”
Jerrold Spinhirne from Chicago is a shut-in. He says “the thing that helps me through my day the most is listening to audiobooks. Before becoming ill, reading was one of my greatest pleasures. For the last six years, due to increasing cognitive difficulties brought on my ME, I can read only briefly with great effort. I find listening to audio much easier and enjoyable. I am very grateful to the volunteer readers at librivox.org for their free recordings of books in the public domain. The librivox recordings of Dickens, by Mil Nicholson, are my current favorites. I must spend most of the day lying down in a dimly lit room and audiobooks make good companions.
“The other valuable thing for me is keeping in touch with my friends and fellow sufferers around the world via social media. … I don’t know how I would survive without the support of my dear online friends. Weeks go by for me without seeing another soul, besides the delivery people and the woman who cleans my apartment.”
Cyd James, an American living in Australia, gets such joy as she can from a child's e-mails and chirping birds. She writes: “You asked what little things brighten up a patient's day. Our family live in the USA. Therefore, the first thing that brightens up my day is to get an e-mail from my 9-year-old granddaughter. The way she sees the world makes life more innocent and takes me back to my youth.
“And second, to hear the birds chirping outside. I get amazed at how after a heavy rain, the birds are immediately out chirping once again. They don't let the storms get them down.”


Salon.com
Comments
How can the AIDS establishment continue with a stale "it's caused by HIV" theory when there are ICL cases cited in medical journals dating back to 1992? While millions of ailing immunodeficient CFS/ME patients get belittled and neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money. How can it make sense to anyone?
In the U.S. last year, the NIH spent $3.1 billion researching perfectly healthy HIV+ people. Sick, ailing immunodeficienct (some of us dying) CFS/ME patients received a meager $6 million. How can it make sense to you? Source: http://report.nih.gov/rcdc/categories/
It's so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. AIDS patients are simply more CFS patients, who also happen to harbor a seemingly harmless virus, HIV. AIDS patients are just the tip of the CFS iceberg, and it's well-documented that HIV is not the cause of CFS/ME.
How else do you explain that there is no CFS/ME epidemic in the HIV+ population? CFS/ME does not discriminate. The answer is that there is; any otherwise perfectly healthy HIV+ person that is: 1) symptomatic, 2) better on ARV's, and/or 3) severely immunosuppressed (AIDS)...
...is a CFS patient.
Putting causal pathogens aside for a minute, simply rename CFS, ME, and AIDS all to be "low natural killer cell disease" and only diagnosis patients with "low natural killer cells" with it. Everyone would very clearly see that:
CFS + ME + AIDS = low NK cell disease = one catastrophic epidemic *
* not caused by HIV
Allied government sold-out global public health for sake of profit --> industry, oil, and Orwellian greed. If I weren't only 25% alive, I often wonder if I should 'Occupy' the White House.
Now that the mystery has been solved, could we please stop wasting time and re-allocate all the HIV funding into CFS/AIDS research?
I demand a revolution!
I stopped fighting for myself a long, long time ago.
I fight for humanity.
To learn more about HIV-Negative AIDS:
www.cfsstraighttalk.blogspot.com
Could I be you?
Chronic Fatigue Immune Deficiency Syndrome (CFIDS/CFS) is not a disease. CFS is a syndrome, as its name suggests.
Acquired Immune Deficiency Syndrome (AIDS) is not a disease. AIDS is a syndrome, as its name suggests.
Neither CFS nor AIDS are diseases. A syndrome is a syndrome (not a disease).
Myalgic encephalomyelitis (ME) is a disease, just like MS or malaria.
CFS and ME are not the same (one a syndrome, the other a disease).
CFS (syndrome) patients like to align themselves with ME (disease) patients because it helps give our syndrome the dignity and respect that it currently lacks (i.e., due to the silly, belittling name our government labeled it). I coined this phenomenon 'disease envy.'
I don't entirely disagree that CFS patients should do this. CFS patients have to understand however that we are stealing the name of a legitimate disease, ME. This is the reason why ME patients typically don't like to be lumped in with the CFS patients, because CFS patients' dilute the meaning of ME's very well-defined disease. I don't blame them. If I were a ME patient, I wouldn't want a CFS patient lumped in with me either.
There is currently a massive initiative to get CFS (syndrome) patients properly diagnosed as ME (disease) patients. Simply look-up: ME/ICC vs CFS/Fukuda. You will have to acknowledge however that not all CFS patients will quality for a ME diagnosis. I repeat CFS/ME terminology is not interchangeable, and is not accurate.
I see the big picture as to why CFS and ME should not be entirely severed (at least until the initiative is complete), as there is a high correlation and probable same causal pathogen shared between the two maladies. Allied government (political) simply named us two different things so we don't roll-up into the same category (i.e., by ICD-coding) on a world-wide level, which would garner more attention then require their public response.
It utterly horrifies me that we pay these peoples' salaries (political) to mask the very problem that they created.
Government works for us (not vice versa), right?
www.cfsstraighttalk.blogspot.com
Tests that are used in diagnosing the illness include: detection of hydrogen sulphide (H2S); tests for lactose and fructose malabsorption (see the work of Dr Kenny de Meirleir in Belgium); Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration; Brain neuro SPECT & PET scans and MRI brain scan; Mitochondrial Dysfunction; TH1/TH2 imbalance; Natural Killer Cell Function (Activity) testing; abnormalities of the 2-5A pathway (RNase-L ratio); Virology; Heart Function; Neurocognitive testing & sleep studies; Endocrine testing.
Additional information on testing can be found here: http://esme-eu.com/testing/category123.html
Thank you for continuing to cover this urgent health issue. Please look very closely at the work of Dr Byron Hyde and Dr Kenny de Meirleir - both leaders in the field of ME diagnosis.
I have been under treatment now for 8 months and also follow an extremely strict diet. I too can tell you the day that I first fell ill. After four years of illness and being almost house-bound I began working part-time two weeks ago.
I have been so sick that all I could do was lie in bed listening to favorite movies, unable to actually watch them because light was too painful.
I could not have gotten through this without my family. I was lucky to have been able to marry the love of my life, have children (now grandchildren too), and have a successful career before collapsing on October 24, 1994. It was hard to lose the career, but my family took good care of me. At my sickest I lay curled up in bed in a darkened room, listening to my favorite movies because watching them was too painful. My daughter would bring me green tea (for my immune system, she would say) and gently stroke my hair. My son figured out how to get me on internet while lying on my back. And my husband has stayed with me all this time, finding ways to pay for very expensive experimental medicine - but mostly being a very large warm teddy bear.
I had an Irish setter and a golden retriever when I first fell ill. They saw nothing wrong with my hanging around on the big bed with them all day - they just figured I'd gotten smart and adopted their lifestyle. Now I have two Irish setters. I'm not even sure they know I'm sick, but we all den together.
It is both a blessing and a sorrow that I have two grandchildren, because I don't get to see them often - they live in a different state, about 1900 miles away. I do enjoy them when I can.
My parents used to come visit me often. I'd save up special movies for us to watch together. That helped as well.
But I would never have gotten through this without Bob. We've been married 37 years - 18 of them with me sick. So although getting this terrible disease wasn't exactly lucky, I have to consider myself lucky anyway. I know too many who got sick in their teens and are still sick in their 40s. At least I did get to find and marry Bob, did get to have a career.
The other mainstay in my life is my friends on internet. I hated what my body had done to me, but as I began to admire and like people on line who had the same disease, I discovered I could accept myself, too. They are still my friends, social network, source of jokes, shared sorrows. I could not do without them.
Thank you again for focusing on our disease. We are all grateful to you. Perhaps some day it will be recognized in the mainstream, and people will not lose decades of their lives to it. If so, you have helped to make that happen.