Thursday, May 22, 2008
Tuesday, May 6, 2008
'Seven genetic types of ME' found
Geneticists have identified a biological basis for seven different subtypes of chronic fatigue syndrome.
The researchers from St George's Hospital, University of London, hope the work could lead to a blood test to distinguish between the forms.
Campaigners hope it will help counter the opinion, which remains in some quarters of the medical profession, that it is a psychological condition.
The research findings are to be presented to a conference in Cambridge.
| | It's a hard illness to get a handle on, so a clinical test would be the single best way forward for everyone Neil Abbot, ME Research UK |
Chronic fatigue syndrome (CFS), also known as ME, is a condition with a diverse range of symptoms but particularly characterised by profound muscle fatigue after physical exertion.
In its most extreme form, CFS/ME leaves sufferers bed-ridden. There is currently no diagnostic test or cure.
It affects around one in 200 people.
'Biologically meaningful'
The St George's study looked at 55 patients from the US and UK with the condition, and carried out a genetic analysis of them and 75 healthy blood donors.
It identified the seven distinct subtypes of CFS/ME identified by a specific genetic pattern.
These were linked to specific symptoms.
Type one had the worst anxiety and depression levels, along with poor sleep and high pain levels.
Type two was characterised by significant post-exercise fatigue and joint and muscle pains, while type three was the mildest form of the disease.
The research identified type four as linked to moderate levels of body pain and sleep problems, with type five having stomach complaints and the most marked muscle weakness.
Type six was specifically connected to fatigue, and type seven had the most severe symptoms including pain, swollen glands and headaches.
Type four and type six were the most common forms of the condition.
Dr Jonathan Kerr, who led the St George's research, said: "We must now determine what these sub-types represent, as they appear to be biologically meaningful, and discover their natural history and possibilities for treatment."
Neil Abbot, of ME Research UK, which is organising the conference along with the Irish ME Trust, said: "The discovery of a 'thumb-print' for the illness would be the single greatest advance that could be made because, at the moment, diagnosis is on the basis of a set of vague symptoms association with other illnesses.
"It's a hard illness to get a handle on, so a clinical test would be the single best way forward for everyone."
Friday, January 18, 2008
Are YOU Bendy Too?
It took me 9 years before I realized how big a role my hypermobility was playing in my health. It was that discovery which finally led to my recent diagnosis of Ehlers-Danlos Syndrome (it's a collagen disorder of several different variations )
The drawing above, the Beighton Score, is what a medical professional will use to rate your "bendiness", tho it's not the be all and end all on the subject.
more on the subject soon...
Wednesday, January 16, 2008
CFS/FMS RULES OF ETIQUETTE
PERSONAL HYGIENE
1. Decisions about which body part to wash depend on which doctor you're seeing today, i.e., face/ears for the ENT; feet for the podiatrist; arms for blood tests; etc...
2. Proper use of toiletries can forestall bathing for several days. However, if you live alone, deodorant is a waste of good money.
3. Read labels carefully. Ever notice how much the can of room freshener resembles the can of deodorant?
4. Remember to warn your spouse before kissing if you've just taken your herbal remedies, since your breath now smells like grass.
IN THE KITCHEN
1. If you can't remember what it is you're cooking in the pot, whatever it is, it can probably use more salt.
2. Do not toss that cold cup of coffee into the dryer or set the iron in the refrigerator to cool off, no matter how good an idea it may seem at the time.
3. When your husband tells you "Don't worry about dinner, just throw some frozen chicken in the oven and forget it", DON'T forget it.
4. When everything INCLUDING the can opener is dirty, it may be time to wash some dishes.
5. It's bad manners to fall asleep at the table, especially in the food.
6. If you're having a bad day, there's nothing better than pizza and quiet.
DRIVING ETIQUETTE
1. Always place a Post-It Note on the dashboard telling you where you're going. And when you get there, place another on the dashboard that says HOME.
2. Never relieve yourself from a moving vehicle, especially when driving.
3. Always carry an electronic homing device in your car and with you so you can find your car in the parking lot.
TIPS FOR ALL OCCASIONS
1. If you have to vacuum the bed, it's time to change the sheets.
2. If you take the dog for a walk, make sure he brings you back.
3. Nevermind about taking one day at a time. Just stick to one thing at a time.
4. Try to spend at least 45 minutes each morning doing one get-up.
5. Work at learning something new every day, like sitting up, for example...
6. Remember to breathe when napping. It's unnerving to wake up and see vultures staring at you.
7. Learn to understand your "body language":
Joints - "I ache! It's going to rain!"
Stomach - "You're getting me upset!"
Nose - "Oh, oh, I'm getting a cold!"
Head - "Stop it, all of you! I'm getting a migraine!"
1. Decisions about which body part to wash depend on which doctor you're seeing today, i.e., face/ears for the ENT; feet for the podiatrist; arms for blood tests; etc...
2. Proper use of toiletries can forestall bathing for several days. However, if you live alone, deodorant is a waste of good money.
3. Read labels carefully. Ever notice how much the can of room freshener resembles the can of deodorant?
4. Remember to warn your spouse before kissing if you've just taken your herbal remedies, since your breath now smells like grass.
IN THE KITCHEN
1. If you can't remember what it is you're cooking in the pot, whatever it is, it can probably use more salt.
2. Do not toss that cold cup of coffee into the dryer or set the iron in the refrigerator to cool off, no matter how good an idea it may seem at the time.
3. When your husband tells you "Don't worry about dinner, just throw some frozen chicken in the oven and forget it", DON'T forget it.
4. When everything INCLUDING the can opener is dirty, it may be time to wash some dishes.
5. It's bad manners to fall asleep at the table, especially in the food.
6. If you're having a bad day, there's nothing better than pizza and quiet.
DRIVING ETIQUETTE
1. Always place a Post-It Note on the dashboard telling you where you're going. And when you get there, place another on the dashboard that says HOME.
2. Never relieve yourself from a moving vehicle, especially when driving.
3. Always carry an electronic homing device in your car and with you so you can find your car in the parking lot.
TIPS FOR ALL OCCASIONS
1. If you have to vacuum the bed, it's time to change the sheets.
2. If you take the dog for a walk, make sure he brings you back.
3. Nevermind about taking one day at a time. Just stick to one thing at a time.
4. Try to spend at least 45 minutes each morning doing one get-up.
5. Work at learning something new every day, like sitting up, for example...
6. Remember to breathe when napping. It's unnerving to wake up and see vultures staring at you.
7. Learn to understand your "body language":
Joints - "I ache! It's going to rain!"
Stomach - "You're getting me upset!"
Nose - "Oh, oh, I'm getting a cold!"
Head - "Stop it, all of you! I'm getting a migraine!"
The Burden of Proof Rests Heavier on Misunderstood Illnesses.
Here at a time when the FDA is finally approving drugs for the treatment of fibromyalgia (Lyrica being the first so far) the media pipes up with the, "Is It Real?" question again - some outlets more politely than others e.g. the recent New York Times article - I won't even bother to link to the other articles in that vein which have been quite a bit more insulting. Feeding a portion of this latest rash of articles is the fact that Dr. Frederick Wolfe, who had originally "discovered" fibro in the early 90's has now decided it's a psychosomatic illness.
I'm of two minds about the situation. The reality of the condition I don't feel is in question. The fact that doctors allow it to be the final diagnosis and cease looking any deeper I feel is a problem.
Having been diagnosed with fibro and CFS a decade ago, I'm angry it took me 10 years to get the more accurate diagnosis of Ehlers-Danlos. There are a portion of doctors treating Fibromyalgia (and to be fair, CFS) as a wastebasket diagnosis. Can't figure it out? Blood work odd but not overtly dangerous? Fibromyalgia!
Do I believe this collections of symptoms labeled Fibromyalgia exist? Absolutely! Do I believe that once that diagnosis is received it's the end of the diagnostic road. Emphatically NO! There are subsets within both Fibromyalgia and CFS, and until a larger portion of the medical community starts taking a serious look at that effective treatment and true respect of these illnesses are a ways off I fear.
Tuesday, January 15, 2008
ah the frustration. i managed to get locked out of blogger.com (how many people can do that?) by getting crossovers with my google account and another email. as a relatively computer literate individual i can't believe it took 5 months to straighten that out. some days i really wish computers would quit "simplifying" my life for me [sigh].
Monday, August 13, 2007
You're your own best advocate!
The Lupus Lady's Autoimmune Disease Support site has an interesting collection of conditions (tho I'm not sure I'd classify them all as strictly autoimmune conditions) many of which are found coexisting with conditions like Fibro or CFS. She's got fact sheets for some conditions and links to amazon.com for others but I'm putting it out there as a nice jumping off point for those that feel there's more to their condition than what's been diagnosed by their doc(s) so far.
Which brings me to a rant I must get off my chest then I promise no more rants for a good long while (too many blogs full 'o rant out there already).
I'm 35. I've been sick since I was a toddler! That's way too many hours (days, months, years?) wasted in doctors waiting rooms, and way too much of what's left of life consumed by illness in the meantime. When someone is dealing with an Enigmatic Illness it often takes years, sometimes decades before they're diagnosed. In the meantime you're called crazy or dosed with half the anti-depressants under the sun - unfortunately that's not an either/or as often as it's, "You're nuts, take these pills", especially if the patient is a girl/woman. See, that lets the doctor feel like he's off the hook and then he gets to walk away with a sense of, "Hey, solved that one...NEXT!" If I hadn't kept pushing, and kept researching, and kept talking I'd doubtless still be waiting for a diagnosis and may never have found out about Ehlers-Danlos Syndrome.
A favorite quote of mine is by Ralph Waldo Emerson: Knowledge is the antidote to fear. As chronically ill people some of the biggest favors we can do for ourselves regarding our health care is to educate ourselves, keep up-to-date on the latest developments, and talk to one another. It was in an online support group for Fibromyalgia that I found out about EDS, I went on to research the daylights out of EDS, and finally found a geneticist and genetic counselor within driving distance - all online!
Thank God for the internet!
The internet has become our great equalizer. If we can't find it on the internet there's a good chance we can find a book about it on the internet. With such a fantastic resource at our fingertips I truly believe we can become our own best health care advocates if we're willing to. And if/when we can't, we need to ask for help from those around us (I'm still working on that asking for help part. :o)
Which brings me to a rant I must get off my chest then I promise no more rants for a good long while (too many blogs full 'o rant out there already).
I'm 35. I've been sick since I was a toddler! That's way too many hours (days, months, years?) wasted in doctors waiting rooms, and way too much of what's left of life consumed by illness in the meantime. When someone is dealing with an Enigmatic Illness it often takes years, sometimes decades before they're diagnosed. In the meantime you're called crazy or dosed with half the anti-depressants under the sun - unfortunately that's not an either/or as often as it's, "You're nuts, take these pills", especially if the patient is a girl/woman. See, that lets the doctor feel like he's off the hook and then he gets to walk away with a sense of, "Hey, solved that one...NEXT!" If I hadn't kept pushing, and kept researching, and kept talking I'd doubtless still be waiting for a diagnosis and may never have found out about Ehlers-Danlos Syndrome.
A favorite quote of mine is by Ralph Waldo Emerson: Knowledge is the antidote to fear. As chronically ill people some of the biggest favors we can do for ourselves regarding our health care is to educate ourselves, keep up-to-date on the latest developments, and talk to one another. It was in an online support group for Fibromyalgia that I found out about EDS, I went on to research the daylights out of EDS, and finally found a geneticist and genetic counselor within driving distance - all online!
Thank God for the internet!
The internet has become our great equalizer. If we can't find it on the internet there's a good chance we can find a book about it on the internet. With such a fantastic resource at our fingertips I truly believe we can become our own best health care advocates if we're willing to. And if/when we can't, we need to ask for help from those around us (I'm still working on that asking for help part. :o)
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