Saturday, March 19, 2011

Abysmally low funding of ME/CFS research is targeted by patients

Autographed Copy of Toni Bernhard's "How to be Sick"

Think about bidding on my book. All proceeds go to MCWPA, the ME/CFS Worldwide Patient Alliance, dedicated to fighting for research money to be allocated for finding the cause of Chronic Fatigue Syndrome. I'll sign the book with a personal message for the winning bidder.
eBay: Find SIGNED - How to Be Sick by Toni Bernhard in the Books , Nonfiction category on eBay.

BUV Test for ME/CFS



Dr. Kenny De Meirleir of the Brussels Free University (VUB) has announced that he has successfully developed a diagnostic test for ME/CFS. The Myalgic Encephalopathy Association Belgium (MEAB) estimates there are between 30,000 to 40,000 people in Belgium with ME/CFS.

Since 2002, the Flemish government has invested over €10 million in five "reference centres" across the region in Leuven, Antwerp, Ghent and Brussels for the diagnosis and treatment for ME/CFS but offer only cognitive behavioural therapy and physical rehabilitation.

"These people have been mistreated for years," Dr De Meirleir says. "CFS was treated as a psychosomatic complaint. But someone who runs 10 metres after a bus and then has to spend a week in bed recovering has a serious medical problem."

The test, manufactured by Protea Biopharma, in which Dr De Meirleir is a partner, detects the presence of hydrogen sulphide (H2S), which is produced in the intestines when bacteria come in contact with heavy metals. People with ME/ CFS have been shown to have higher concentrations of intestinal bacteria than normal, which leads to higher levels of H2S.

H2S is a gas present in minuscule concentrations in normal people but at toxic levels in ME/CFS patients. The reasons for overproduction of bacteria can range from lactose intolerance to viral infection to stress.

According to the draft of a journal article soon to be published by Dr. De Meirleir and his team, H2S causes intolerance to light and noise, a depressed immune system and low white blood cell count. It also leads to retention of mercury by the body, which in turn produces cell death and damage to energy metabolism. The biggest effects, though, are produced on the central nervous system, explaining the main symptoms of ME/CFS.

"There's still a great deal of work to be done to find a cure" Dr. De Meirleir told Radio 1 listeners   "CFS is not an illness, it's a condition," which means that the underlying causes of ME/CFS could vary widely and that each would have to be treated on its own.  

Note:  Dr. Kenny De Meirleir was one of the panel members of the Canadian  ME/CFS Working Case Clinical Definition, Diagnostic & Treatment Protocols, a Consensus Document published in 2003 which can be viewed at

Lydia E.  Neilson, M.S.M. , Founder
Chief Executive Officer
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SEPTEMBER 22 - 25, 2011


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Thursday, March 17, 2011


It's been 6 weeks since the decision and I still haven't gotten any paperwork.  I don't want to drop my expensive (but useless) Blue Cross till I have Medicare in place, so I checked if I'd fallen through the cracks again (SS once lost my file for 2 years).  My lawyer advises that it takes 60-90 days for a written decision.
Sooooooo, don't go cancelling your private insurance or running up the Visa the day you get your decision -- you've still got quite a wait till you see any money.

Tuesday, March 15, 2011

"What I'm Really Thinking"

What I'm really thinking: The woman with ME (Guardian, 12 March 2011)

Online >


Twenty years coping with the symptoms of ME is bad enough, but 20 years
of coping with people's

reactions to it adds insult to injury in the most literal sense.

First was the era of "yuppie flu", when people you'd never met before
felt entitled to

interrogate you as to the validity of your illness and your presumed

deficiencies. Nowadays I get either the "you need to pull yourself
together" brigade, or the

alternative types who ask what my illness means, and are sure I could be
well if only I

understood what it was trying to tell me. Well, if I haven't figured
that out in 20 years, that

must mean they think I'm pretty thick. Then there are the ones who say,
"But you always look so

well." Of course I look well when I'm out and about; it's because that's
a day when I'm well

enough to drive. They should see me on the other days.

Of course, this is largely about the rudely healthy being in denial of
the reality of illness.

Yes, it's scary to think you could wake up with a cold one day and never
be well again, and

there's little you can do about it. But don't try to force me to collude
with you in trying to

deny that it happens.

What I mind most, though, are the people who listen to my story with
such sympathy, but then

take equal time to describe the horrors of their current
cold/flu/chilblains. My usual

response? "Don't worry too much about feeling ill, it gets easier after
the first couple of

years." That shuts them up.

© 2011 Guardian News and Media Limited.


This is one in a series called "What I'm really thinking", published on
a Saturday, every week

in the Guardian Newspaper in the UK.

They invite people to contribute, in time for publication, next Saturday
(19 March 2011).

e-mail - [email protected]

For inclusion next Saturday, letters by post should reach them by first
post on Tuesday and may

be edited.

This is my reply

Re: What I'm really thinking: The woman with ME, Guardian, 12 March 2011

We may never have known about Laura Hillenbrand at all, or that she is a
very severely affected sufferer of M.E. (Myalgic Encephalomyelitis) but
for her success as a writer, firstly, of "Seabiscuit", the novel behind
the film about the true story of an undersized racehorse with an awkward
gait, whose unexpected victories raised the spirits of a nation during
the Great Depression and now, "Unbroken", about the life of athlete and
war hero, Louis Zamperini.

In a recent Question and Answer interview (An author escapes from
Chronic Fatigue Syndrome, New York Times, 4 February 2011
- Short link -, Laura has taken the
opportunity to increase knowledge and raise public awareness of this
dreadfully disabling illness, with personal experience, which may
otherwise have remained within the four walls of her bedroom and of
those who have not been able to reach outside them in the way her
extraordinary success has allowed.

There is only one point on which she and I significantly differ: Laura,
now 43, who has been sick for 24 years since the age of 19, says that
she doesn't remember what it is like to feel well. I am 57, have been
ill for 23 years but, even after all this time, I can vividly remember
what it is like to be healthy, go to work every day, have a full social
life and the fair share that everyone deserves, as though it were only
yesterday. And I want it (or at least some of it) back - for me and
everyone else who has been similarly robbed.

Everyone, of whatever age they were when this awful illness hit them,
has lost - or has had stolen from them - a huge chunk of their life,
whether childhood, teenage years, career, or sometime the retirement
they had earned. With the support of fellow sufferers, like Laura
Hillenbrand and some smart academics, I intend to try to stop this thief
and perhaps restore some of his ill-gotten gains.

Yours sincerely
[email protected]
Dr John H Greensmith
ME Free For


Remember they are inviting people to send in their contributions.

Let's not disappoint them. Please make an extra effort to make that
Letters Editor's desk creak

under the weight of what we are really thinking.

Please don't leave it to others and then regret that you lost the

This is a National newspaper in the UK. M.E. doesn't recognise any
borders, so I hope that

sufferers of this awful illness from all over the World will tell us all
what they are really

thinking too.

e-mails to [email protected]

Best wishes
[email protected]
Dr John H Greensmith
ME Free For

Monday, March 14, 2011

Quote of the Week

In your journey with CFS/fibro, you'll run into many doctors who will insist "there are no objective symptoms" despite you telling them that there *are* objective symptoms.  Doctors who will deny the existence of 5000+ research studies showing objective abnormalities.  Doctors who are soooooooo determined to call it IAIYH (It's All In Your Head) that they will ignore things that would ordinarily rate further investigation (e.g., one of our activists had a missed case of appendicitis and nearly died because her doctor wrote it off to just more baseless whining).
Just remember that there are those whose thought process is "don't confuse me with facts, my mind is already made up".