CFS/ME awareness day 2009Today is again the CFS/ME/fibromyalgia awareness day. I'll ramble on for a while and the CFS/ME awareness journal starts below the blue ribbon, as usual.
So far this year really has been the suckiest one in many years. First the myofascial pain syndrome, which means that I cannot spend another winter in Finland, unless I want to spend up to five months mostly housebound, which isn't my idea of fun. Then in late March my adrenal insufficiency flared up. Normally these flares last 1-2 weeks, but this one is still on ...which probably means it is not a flare but the permanent new state of my life. I've had a really hard time adjusting to it, the constant ravenous hunger, muscles being so tense that even my toes cramp up (despite several muscle relaxants) and the idea that any stress can kill me. It's funny how you can be theoretically adjusted to one chronic condition, yet a new one puts you through the same process of not willing to accept your life. Yet life must go on, somehow, even if it's now a life of suckiness.
At least one front keeps on going well, which is writing. I'm still waiting to hear from Finnish publishers about my new novel manuscript (only got one rejection so far, about 30 submissions altogether) and I haven't got much other creative writing done lately, but that will hopefully change. I've been doing some medical copywriting work for overseas ad agencies, which is quite exciting. Recently I translated a movie and have been working on my first SEO gig. Work is pretty much all the excitement there currently is to my life, sadly, which is why I try to focus on it unnecessarily heavily. I have no plans for the summer, except for trying not to die of the heat, which is fairly boring as far as plans go. Hopefully ~fogbank will come to visit me, otherwise I have no idea what I'll do. At some point I'll hopefully start writing my next novel, but not sure when.
Today is also the launch date of the Creative for a Second Art Tour in Australia, an art exhibition for spreading CFS/ME awareness. It's the second art exhibition I'm participating in. It's a shame I can't attend it in person, but maybe some of you can?
My novel The Atlas Moth will be available on the 18th of May.
25 things you didn't know about CFS/ME(or at least some of you didn't)
See also my newest CFS/ME interview: Wash it away.
1. The proper scientific name of CFS/ME, myalgic encephalomyelitis, means inflammation of the brain and spinal cord causing pain. This name has been in use since the 1950s.
2. There have been dozens of CFS/ME epidemics on at least four different continents - some of them affecting hundreds of people in a single hospital. The most famous ones have been in the United States, the United Kingdom and Iceland. The CDC was called to inspect the Lake Tahoe epidemic in the 1980s, but the inspectors were more interested in the local casinos and skiing resorts (this is all very well documented in the book Osler's Web). The CDC has since classified CFS/ME as a "number one priority infectious illness", yet in practice this has had very little effect.
3. Former/older names for CFS/ME include atypical polio, epidemic neuromyasthenia (myasthenia = muscle weakness) and low natural killer cell disease (LNKS, in Japan). There are dozens of other, now obsolete names, mostly based on locations where epidemics have taken place (e.g. Tapanui flu, Akureyri disease and Royal Free disease).
4. CFS/ME can affect children. The youngest reported CFS/ME patient has been a six-month old baby. It is thought that animals (e.g. cats, dogs and horses) can also get CFS/ME.
5. In fact, CFS/ME has been found to be the most common reason for long-term school absences in children in the UK (likely also elsewhere, but it hasn't been studied).
6. Laura Hillenbrand, author of the bestselling book Seabiscuit, has CFS/ME. She wrote the book mostly lying down in bed and relapsed badly afterwards. She has written an excellent article sharing her story.
7. Naomi Weisstein is a neuroscientist, author, professor of psychology and feminist. She fell ill with CFS/ME in 1980 and overexhausted herself, trying to get over the illness with exercise. She's been bedbound for 25 years.
8. Many viruses have been connected to CFS/ME, including parvovirus B19, herpesviruses, enteroviruses and retroviruses (the group of viruses that also includes HIV). Antiherpesvirals can be very helpful, even curative, but enteroviruses are difficult to treat. Some doctors have had success with interferons. Parvovirus B19 appears to respond well to intravenous immunoglobulin.
9. The symptoms of CFS/ME can resemble those of MS, AIDS and many other conditions. "I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!" is a famous quote from Dr. Marc Loveless, an infectious disease specialist. "We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease", CDC's William Reeves has said. "I've seen patients paralysed, dying Aids victims, starving children... but I've never seen anyone as ill as Lynn" is what journalist Gill Swain said about Lynn, a woman with CFS/ME who spent 16 years bedbound and recently died.
10. CFS/ME is about three times more common than MS (with an estimated prevalence of about 0.5%), but equally severe (or even more so, because it can affect any organ system). Yet CFS/ME gets only a tiny fraction of the research money that MS gets (this year CFS research gets $4 million from the CDC and MS gets $173 million - over 40 times as much, even though MS has been well treatable with LDN for a long time) and there are no high-profile fundraising events (like walks or races).
11. Some doctors think CFS/ME is a viral infection of the heart. Others believe the cardiac problems are caused by mitochondrial dysfunction. What is known is that cardiac problems are extremely common (I have valvular damage and suspected myocarditis from CFS/ME).
12. There are no FDA-approved drugs (or EMEA-approved for that matter) for CFS/ME, even though there are hundreds of drugs that can be helpful in the treatment of the illness (my book features over 250 options). The first official one, an immunostimulant/antiviral called Ampligen which is given intravenously, may receive FDA approval in a few weeks. It has been studied in CFS/ME since the 1980s.
13. Fatigue is a poor descriptor for the experience of CFS/ME patients (and "tiredness" has nothing to do it - even though some patients also suffer from excessive tiredness). It is more like weakness and can be so severe as to essentially be a form of paralysis. It is only one of dozens of possible symptoms and may not even be the worst one.
14. About 25% of patients are thought to have severe CFS/ME. Some of the most severe patients are completely bedbound and may be unable to eat or speak or even recognize their family members. Most of them are in constant agonizing pain and usually have problems tolerating any sensory input.
15. In many countries it is impossible to get on disability for CFS/ME - even if you're completely immobile and have hundreds of abnormal test results. Even in those countries where it is possible, it is often extremely difficult.
16. Many prestigious medical journals refuse to publish any studies about CFS/ME - unless the study attempts to show it is a psychiatric/psychosomatic illness (or "psychosocial construct").
17. CFS/ME can begin very suddenly - one day you're fine, the next day you're so sick you're unable to do anything at all, and it's not going away. Sometimes the onset is almost like a lightning strike, as in Laura Hillenbrand's case (see #6).
18. The most universally effective treatment for CFS/ME is rest.
19. CFS/ME causes brain damage visible in MRI scans in about half of the patients (yep, yours truly included), yet this evidence is often dismissed, even when the locations of the lesions correlate with the symptoms. SPECT scans of the brain show even more staggering abnormalities, often suggestive of stroke.
20. It is often assumed that CFS/ME only affects people who "can afford to get sick". Yet a study done in Nigeria found that CFS/ME actually appears to be more common in that developing country than the United States.
21. The most common thing that worsens CFS/ME is exercise. It can worsen symptoms for days, weeks or even months, and often the relapse is delayed by 24 hours or more. Mental exertion can also cause significant relapses.
22. Despite this, exercise is commonly recommended as a therapy for CFS/ME, even though it has killed people and put patients in wheelchairs. How would you feel if you were chronically ill and the most commonly recommended treatment was not only deleterious, but could kill you? (The same doctor who first diagnosed my likely myocarditis - but didn't tell me about it - told me to exercise more. Usually patients with an infection of the heart muscle are not advised to exercise.)
23. Of the two most commonly recommended treatments for CFS/ME, one (cognitive psychotherapy or CBT) is pretty much useless and the other one (graded exercise therapy or GET) is dangerous. There are no official recommendations for other treatments despite many studies supporting their efficacy.
24. Other things that can cause relapses (mild or severe, depending on the person) include heat, cold, noise, light, electromagnetic fields, infections, anaesthesia, medications, dehydration, standing upright (sometimes even sitting), many foods (some patients become intolerant to most or all even foods), alcohol, chemical exposure, changes in weather, allergies and altitudes. A relapse can last days, weeks, months or even years.
25. CFS/ME can kill by several ways, such as opportunistic infections, cancer, organ failure and sudden cardiac death. With some types of B cell lymphomas CFS/ME can increase the risk 1,000-fold.
CFS awareness day journal 2005 CFS awareness day journal 2006 CFS awareness day journal 2007 CFS/ME awareness day journal 2008
Works in progress
Works finished but not yet submitted
Works I wish to start in the near future
Non-art/DA TODO (inconclusive)
My preliminary schedule for the following months
3rd June market research interview
6th June outdoor party
6th June d'n'b party
8th June doctor visit
8th June interviewing Anthrax
9th June work deadline
13th June street party
16th June trip to Turku
20th-30th June ~fogbank in Finland
26th-28th June trip to the summer cabin
3rd-5th July cruise to Stockholm
23rd July-4th August trip to the Netherlands
6th-9th August Assembly demoparty
I was interviewed by
, read the interview in his journal.
wrote a poem dedicated to my ASCII art. It's quite good too!I've set up a discussion thread for my sociomedical essay series on my forum, please read it and contribute if you have any opinions.
My stock ~diamondie-stock
Member of ~critiqueme =fi
Supporting ~photo-class !suture ~onewordatatime ~Lit-Source `poeticks ~Reporters ~Activists `ArtistsForCharity ~fotoFRIDAY *WordCount ~LineCount *litNEWS ~DisabilityArt ~fm-me-club
Website
My CFS/ME/FM book Flickr YouTube Wishlist Articles on Suite 101 My novel: The Atlas Moth
Devious Comments
I'm sorry your health has been so rough lately.
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Illyria: Would you like me to lie to you now?
Wesley: Yes.
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I am alone now, in Istanbul.
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It's raining in Baltimore, baby, but everything else is the same.
The next night I went into an adrenal crisis and all hell's been loose since then. I don't know what triggered it. Just goes on to show how unpredictable everything is.
It's great that I still have people online, as my social life IRL isn't too dazzling (just recently didn't see any friends for over a month). People like you. We really should talk some time, but it seems you only have AIM and Yahoo and I only have MSN, Skype and IRC...
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What do death, Chinese checkers and
My CFS/ME/FM treatment book
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*KotOR-Flyboys-ClubCarth and/or Atton fans! ~masseffectclub Mass Effect! =ClubBBW Big Beautiful Women ~Mando-ade Mandalorians!
~megan3c on KFM, FF.net, YouTube, and...well, anywhere else, really.
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What do death, Chinese checkers and
My CFS/ME/FM treatment book
I've been quite down since yesterday after finding out a previously mildly/moderately ill is now in hospital extremely sick with a CFS/ME relapse. I don't think a healthy person can really understand how devastating it can be. I have some friends who are quite severely ill, but it's shocking that someone can so suddenly get so much worse. At times we're all in denial.
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What do death, Chinese checkers and
My CFS/ME/FM treatment book
--
*KotOR-Flyboys-ClubCarth and/or Atton fans! ~masseffectclub Mass Effect! =ClubBBW Big Beautiful Women ~Mando-ade Mandalorians!
~megan3c on KFM, FF.net, YouTube, and...well, anywhere else, really.
--
What do death, Chinese checkers and
My CFS/ME/FM treatment book
--
*KotOR-Flyboys-ClubCarth and/or Atton fans! ~masseffectclub Mass Effect! =ClubBBW Big Beautiful Women ~Mando-ade Mandalorians!
~megan3c on KFM, FF.net, YouTube, and...well, anywhere else, really.
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