Posted on 10/07/2015 12:59:44 PM PDT by Seizethecarp
Before he got sick, Whitney Dafoe was an award-winning photographer and a world traveler. But now, at 31, Whitney lies in bed in a darkened room in his parents’ home, unable to talk, walk or eat. This isn’t the picture that people imagine when they hear “chronic fatigue syndrome,” which is often viewed by the public and the health-care community as a trivial or primarily psychological complaint.In a February report, the Institute of Medicine gave the illness a new name — systemic exertion intolerance disease. Many patients have long criticized the name “chronic fatigue syndrome” for not reflecting the seriousness of the illness. The new name, some say, is not much of an improvement. Some patients call it by an older name, “myalgic encephalomyelitis.” Most official documents refer to it with a compromise term, “myalgic encephalomyelitis/chronic fatigue syndrome,” or ME/CFS.
The IOM report notes that doctors often lack understanding of the condition and are often skeptical that it is a true medical condition, believing instead that it’s partially or wholly psychological.
Some may therefore be surprised that the illness is now a major research focus for one of the world’s leading biomedical scientists.
That scientist, Ronald W. Davis, is Whitney Dafoe’s father.
Davis heads the Genome Technology Center at Stanford University. In the 1970s, he developed techniques for gene mapping that were later used in the Human Genome Project, for which he was a co-investigator. In 2013, the Atlantic magazine named him one of “Today’s Greatest Inventors, ” along with such people as Vint Cerf, sometimes called “the father of the Internet,” and Elon Musk, one of the founders of electric-car company Tesla Motors.
(Excerpt) Read more at washingtonpost.com ...
Has your blood calcium level been checked?
Thank you- I will look it up.
Not recently.
Very true a lot of docs don’t believe in recurring lymes.
There are so many things that can make you miserable. It could be foods your body reacts to, it could be an imbalance in your gut flora, could be disease, etc. I was miserable for about a decade-it was my thyroid as I have Graves Disease. Thankfully there is a test for it and treatment. I feel so much better.
A doctor friend of ours is convinced that diet and gut balance is the key to health. He said the total time spent on nutrition and health in med school was one day in one class. That’s it-one day. No wonder they get annoyed when patients believe foods can exacerbate or heal a problem. They essentially have no training on nutrition and health issues.
lot of docs
Have no exposure to it
Just because your not in a tick region does not excuse you, the Dr, from not being aware
[[Since I am so tired and foggy I am now all of a sudden clumsy and have taken quite a number of very, very bad falls and sustained very bad injuries which require more down time to heal. Now, I sleep 12 hours a day and still am exhausted. Nothing seems to help.]]
Aint it fun? The brain fog is terrible, making it very hard to think or keep concentration on anything too complicated or lengthy- but the exhaustion is horrible- it absolutely destroys your life
Bump for later.
tried those- didn’t do anything for me- The amount of money I’ve spent trying to find stuff to improve things is huge- too much for too little improvement
IIRC I thought new studies showed that the bacteria can hide in the brain and continue to cause havoc.
At least my vet believes this and periodically will prescribe doxy for my Labs when it appears they are suffering from lymes symptoms again.
Yep—about a year and a half ago I began having the same symptoms. I KNOW I am not mentally as sharp. My coordination is suffering. If I exert myself at all I don’t recover for days. Sleep is not restful. I now have incredible malaise. There is no zest for life at all. When I come home from work all I want to do is sit down, absolutely no energy. I have been to a couple of different doctors and don’t know what else to do!!
It is very upsetting. I was a very active person- not anymore. I am just so tired all the time.
This person does not the bacterial Lyme disease, which can be screened for and sometime cured with difficulty.
ME/CFS is a post-viral syndrome that beats down the immune system allowing numerous childhood viruses that a person’s body had defeated to “reactivate” like Mono (the EBV virus) and can allow Herpes-6 to infect a person in adulthood.
In my case I have ME/CFS with positive blood tests at the NOVA U clinic for chronic reactivated or newly infected:
Herpes-4 (EBV, aka Mononucleosis)
Herpes-6
Coxsackie
Parvovirus B19
I can only be treated for the Herpes-4 using Valtrex at 1500mg/day...frankly a dose that could be dangerous for my kidneys if not monitored closely. Medical science doesn’t seem to have anything at the moment, at least that Medicare will pay for, to treat the other ones.
This is largely the reason most doctors believe there is a psychological component to this as opposed to a physiological one.
Being tired all the time is a bit too subjective to determine cause and effect.
I don't question your condition at all, as it's how you see it and sense it..but a doctor can't do that unless they use simple empathy which some doctors do..the generalist kind.
IMO, what you have to do is to use the age old process of elimination and keep doing it, logging every attempt and keeping records. One would hope that eventually you will stumble upon the key to unlocking the mystery.
One thing we do know, and that is the fact that this condition is much more common in women then men.
Drug companies are trying to find goofy combos of medicines to relive the symptoms and coincidently the more effective compounds are related to SSRI's or anti-depressants.. Hope this helps...but everyone is essentially a unique copy of the human template and we may certainly have unique conditions as a result.
“He also worked on Barack Obama’s 2008 presidential campaign, and although he was already ill by January 2009”
A LOT OF PEOPLE that supported Obama in 2008 felt pretty damn ill in 2009. I don’t see what’s special here.
I know exactly what you mean Faith- I was always on the go- working VERY hard 12-14 hours a day - grueling work- and always had energy to spare at the end of the day-
No more- that all cam to a screeching halt 18 years ago- I have spent those years wasting tons of money, time, and just becoming more frustrated when no diagnosis-
We tell docs “I’m exhausted” and they say “Well I get tired too, but I am working” and it’s like they don’t believe you- I wish they could spend 2-3 weeks in my body just to find out that when we say we’re exhausted, we do NOT mean we’re simply tired!
It’s like having a flu 24/7- NO let up- I feel like telling htem “Try having a flu for 18 freakin years with NO relief- EVER! You haven’t got a clue hwat being tired is all about!”
Very Very frustrating condition- and I don’t even know if it is chronic fatigue, fibromyalgia, or some other condition- Can’t get any answers- they just say Chron ic fatigue because they don’t know what is causing it-
That someone is putting their all into this is encouraging. No one walking the face of this earth wants to live like this.
I’m so sorry, Bob434. I know that this is a problem, and I hope that this scientist finds a cure.
“Many health care providers are skeptical
about the seriousness of ME/CFS, mistake it for
a mental health condition, or consider it a figment
of the patient’s imagination. Misconceptions or
dismissive attitudes on the part of health care providers
make the path to diagnosis long and frustrating
for many patients. The committee stresses
that health care providers should acknowledge
ME/CFS as a serious illness that requires timely
diagnosis and appropriate care.”
You should show any hold-out MDs’s this passage from the IOM report!
https://iom.nationalacademies.org/~/media/Files/Report%20Files/2015/MECFS/MECFS_ReportBrief.pdf
This report converted my own PCP to a believer after he had mocked me to my face for 5 years in the examining room! Well, this IOM report and my bloodwork from the NOVA U. ME/CFS clinic in Davie FL showing 5 reactivated or chronic viruses in my blood...
I wonder if those people ever get their thyroids checked beyond the stupid TSH test.
I would bet a high number of them are hypothyroid.
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