Saturday, May 23, 2009
Friday, May 22, 2009
I am a retired diagnostic radiographer. I became a victim of the word
"fatigue" in 1996 when a rheumatologist decided that the outcome of my
poly-arthralgic pain that caused me significant sleep deprivation was in
fact a description of "fatigue".
I was subsequently diagnosed with post-viral fatigue syndrome.
Eight bedbound years later and a move to a new family doctor and I was
I discovered that I had got an inflammatory process going on all along yet because I was diagnosed with a "fatigue" based condition I didn't get any treatment relevant to my underlying disease.
To functional psychiatry, "fatigue" is caused by a mental health disorder
treatable and curable with CBT and Graded Exercise.
To the rest of medicine "fatigue" is a function of systemic disease.
To patients with ME, "fatigue" is a pure insult of a word and does not even
begin to describe all the symptoms that cause long term debilitation and
But what do you do when the Government and the healthcare system of your
country (in relation to CFS/ME) use the psychosomatic meaning of the word
This is the way things are both here in the UK and around the world.
I have discovered over the last 15 years of campaigning that "fatigue" is a
medically broken word - a double entendre of a word that has two totally
And now that broken double entendre of a word is being used to name a
If the people behind this journal do not understand that the word "fatigue"
was hijacked 20 years ago and that patients are furious that "fatigue" is
now being further welded to Myalgic Encephalomyelitis by the use of this
word as the title of an ME friendly medical journal then there is in my view
no hope for patients with ME.
You should all be changing the language to accurately describe a disease
instead of leaning on the crutch of a broken word - a medical double
You should all be listening to and supporting the knowledgeable patients you
all claim to be interested in helping.
And over these last 20 years all of you should have been confounding the
views of Professor Simon Wessely at every opportunity instead of letting him
and his colleagues own the word "fatigue" in relation to CFS and ME.
Spending the last 20 years turning the other cheek has done absolutely none
of us any good at all.
The word "fatigue" ruined my life and it is ruining many many thousands of
others due to the way this word can be and is being deliberately perverted.
I am now 95% of the way to a re-diagnosis of Behçet's disease - a condition
that has many similarities with Myalgic Encephalomyelitis.
Thankfully, Behçet's disease appears in medical journals with names specific
to neurology, immunology ophthalmology, rheumatology and dermatology;
journals that cover grown-up areas of symptom causation using unbroken words
or words that medically have no double meanings - double meanings exploited
by functional psychiatry for that precise reason.
Stephen Ralph DCR(D) Retired. www.meactionuk.org.uk
Dr David Southall condemned
Controversial paediatrician Dr David Southall has been condemned by the High Court for his "truly shocking" and unjustified accusations that a mother drugged and murdered her son. The scathing criticism came as Mr Justice Blake, sitting in London, upheld a decision of the General Medical Council's (GMC) fitness to practise panel to strike Dr Southall off the medical register for serious professional misconduct.
The Press Association
* David Southall High Court Appeal Judgement
High Court of Justice, Mr. Justice Blake
Journal: Open Neurol J. 2009 Feb 27;3:13-23.
Authors: Thomas M, Smith A.
Affiliation: Centre for Occupational and Health Psychology, School of
Psychology, Cardiff University, UK.
NLM Citation: PMID: 19452031
This study addresses, among other things, the debate as to whether
cognitive deficits do occur with a diagnosis of Chronic Fatigue
Syndrome (CFS). Previous studies have indicated a potential mismatch
between subjective patient ratings of impairment and clinical assessment.
In an attempt to tackle some of the methodological problems faced by
previous research in this field, this study recruited a large sample
of CFS patients where adequate diagnosis had been made and
administered an extensive battery of measures. In doing so this study
was able to replicate previous published evidence of clear cognitive
impairment in this group and demonstrate also that these deficits
occurred independent of psychopathology.
The conclusion drawn is that cognitive impairments can be identified
if appropriate measures are used. Furthermore, the authors have shown
that performance changes in these measures have been used to assess
both efficacy of a treatment regime and rates of recovery.
[Note: This is an Open Access article, the full
content of which is available for free at
Inside the Labyrinth
Down (and Out) in Atlanta
April 28, 2009
Tags: CDC Seeks Input, Five More Years?
Five More years?
The Centers for Disease Control intends to stay in
the "CFS" business for another five years in case
anyone was wondering.
Yesterday afternoon, on Monday, April 27, the
agency held a four-hour group therapy session for
people who have suffered so in the Reeves Era.
The agency has created a five year strategic plan.
Yup. Using the Internet, agency staff put out the
word: they sought "input" on this plan from citizens.
The notice came suddenly last week. People wanted
more time to prepare for the event. The agency was
accommodating, extending its deadline to send in
comments until May 1, or Thursday. But, swine flu or
no swine flu, they stuck to their guns on the matter
of holding the public meeting in Atlanta yesterday.
As it turned out, the all-afternoon call-in fest was
remarkable in myriad ways. I hadn't expected to be
so profoundly affected by it.
In my long memory, it was the first time I have seen
agency staff leave themselves quite so vulnerable.
There was no filter between government staff and
the public, some members of whom arrived in person
to participate in the four hour session in Auditorium
B2 of the CDC's Global Communications Center. One
couple flew all the way from Texas to make their
brief comments, for instance; the wife, ill, the
The agency provided a freebie telephone line for
everyone else to dial up. Thus, one had the option of
listening to the proceedings in the comfort of home
while, say, scanning the front page of the New York
Times, or to actually participate and hear one's voice
piped into the auditorium. It was all very high tech
and nicely worked out.
The sole ground rule in this entire affair had to do
with the number of minutes people were given to go
full tilt at the agency: five. Due to what may have
been an unexpected short-fall in the number of
people who chose to participate-thirty-two by my
count--and the generous four-hour time allowance,
however, organizers allowed that rule to fall by the
wayside. Numerous people managed to pop back into
the proceedings a second time in order to continue
their original train of thought or make additional
points. The afternoon unfolded into a luxurious
expanse of time, in fact, and left the battered
agency asking, at the end, rather
masochistically-"Anyone else?" And in the brief
moment of silence that followed, one sensed a
collective feeling of peace, perhaps the first in a
quarter century. Everyone who wanted to speak their
mind had been accommodated, whether it was to
simply "bring home the hurt" caused by CDC policies,
as one man said, or to plead for the involvement of
outside scientists, or to demand that Bill Reeves be
The language coming from the floor and the common
phone line was often riveting, always thoughtful and,
for the ensuing four hours, it never really let up.
CDC staff arranged for a very sweet lady named
Becky to moderate, no doubt to defang any vitriolic
detractors. Becky had a lovely "thank you" for
everyone who called, no matter their disposition or
rank, no matter how irate their statements.
I had planned to merely listen, but eventually talk of
decades of life lost and minds wasted got my blood
pounding, and I found myself pushing the star key on
my phone. Presto-magic, I was in the queue and
then quickly on the line. Given its monstrous history
in this disease, I said, "The CDC needs to make a
formal apology to every American citizen with this
disease, and recuse itself from the further study of
this disease." I heard a tiny smattering of applause
and imagined more than a few rolling their eyes.
"Thank you," Becky said, sounding a little sad. To
the tender-hearted Becky, I say, "And thank you!"
Acting CDC director Richard Besser was busy with
swine flu on Monday so the agency sent the head of
the National Center for Zoonotic, Vector-Borne &
Enteric Diseases, Lonnie King, in his stead. King is a
veterinarian and, more interestingly, the boss of Bill
Reeves. Also present was Stephen Monroe, who
heads the division of viral and rickettsial diseases.
For those of a sentimental bent, Monroe's division
was the long-ago workplace of Gary Holmes--of the
famous "Holmes" criteria of '88. It was also the
workplace of Keiji Fukuda--of the famous "Fukuda"
criteria of '94.
Fukuda is now the deputy general director of the
World Health Organization. Who says "CFS" ruins
The afternoon began with a rather superfluous if
breathless update on the state of the swine flu
outbreak. CDC staff have been preparing quite
literally for years for such a flu pandemic and should
cases in the U.S. become either more virulent or
common, it's one public health crisis where the
agency might actually score a win, something it
badly needs in these days of unruly U.S. senators
making inquiries into the CDC's spending sprees and
slamming even its ability to prevent and control
Apparently, I wasn't the only one who found irony in
the flu update.
"You have declared swine flu a public health
emergency. With four million cases of CFS, what
does it take to have it declared a public emergency?"
was Kim McCleary's surprising zinger. Go Kim!
Lonnie King began his welcome patter by noting that
two years ago, a CDC staffer had written an account
of her "CFS" for an in-house publication, an account
that he seemed to have found heart wrenching.
"One of our CDC employees came forward," King
He certainly got the diction right, since we all know
admitting to having "CFS" is analogous to coming out
of the closet, and many who care about their
reputations and their livelihoods, if they are lucky
enough to have either, will prefer to stay in. As a
patient in the auditorium noted eventually, "Having
CFS is like having AIDS in the 1980s. You don't want
to tell anyone. There's an immediate response that
you're psychologically unbalanced."
And what federal agency, far, far away from the
Capitol and way down in Atlanta, Georgia may have
played a role in that phenomenon?
At King's mention of a CDC staffer-one of their
own!-spelling out in black and white the nature of
her suffering for agency scientists to read, I was
reminded of my visits to the CDC in the late 1980s. I
discovered then that literally hundreds of letters
from people with "CFS" were pouring into the agency
by the day. These letters collected in boxes in
corridors like so much trash before they were thrown
out. Some of them were ten or more pages long,
handwritten on legal pads. They read like small
And the letters were complemented by frantic,
terrified phone calls from patients that came in
'round the clock. I met a secretary at the agency
whose job description included wrangling a telephone
answering machine that collected these phone calls
that poured in overnight. I was incredulous, but she
insisted that at least one-hundred or more calls
came in during the wee hours-every night. "These
people stay up late," she added. And that was
twenty years ago.
So, Dr. King, I say, Cry your crocodile tears of sympathy, but unless you somehow discovered a mere two years ago that this disease is a nightmare, I remain unconvinced.
Very quickly, agency honchos sat down to listen and
the real business of the afternoon began.
Immunologist Nancy Klimas complained about the
fuzzy strategic plan, which had exactly four
points-things like "laboratory research" and
"Educational Intervention Research."
If there were themes during the afternoon, this was
one of them: zero details.
"Three of these [four] don't look like research goals,"
said McClearly, who seems to have morphed into
Robocop in the last few months. I like the new vibe.
"Your outline-it's so devoid of specifics," added
Jennifer Spotila, a colleague of McCleary's. "What is
the priority order? What funding has been identified?
What are the milestones for performance? How will
you engage extramural researchers? How exactly do
you propose to develop an international consensus
on CFS? I could go on-your outline could have been
written two years ago-or ten."
And to that, I'll add twenty.
Marly Silverman of Pandora offered one of the most
jam-packed and specific counters to the agency's de
minimus five year plan, proposing that the SSA
develop a mechanism to track denial and approval
rates for "CFS" claims, for instance, and that the CDC
"enhance the program of medical providers [doctors,
for the rest of us] to include specialists in neurology,
endocrinology, dentistry, mitochondrial disease," and
more. "We see flaws in studies of defined
populations," Silverman hammered away. "[Create]
provider-based patient registries, with online patient
self-reporting. Cross reference it with patient medical
providers.Send CDC teams to patient providers. We
also suggest visiting these patients at home. The
most difficult cases of CFS-these patients are
bedbound and homebound."
Ahh-great suggestions--even if Pandora may be too
generously crediting CDC staff with the ability to
diagnose a case. But, while floating in the Blue Sky
reality offered by the Centers for Disease Control,
why not ask for the moon? Go for it.
Another theme, no surprise, was suffering.
"I've already lost my twenties-I don't want to lose
my thirties," said the young woman from Texas.
Said her husband, "You will be saving marriages"--if
agency scientists could find a cure.
Another woman took up the cry: "There is an urgency
to this matter. I have lost my thirties, my forties and
my fifties-I don't want to lose my sixties.My
daughter has this disease. If my seven year old
grandson gets this, my heart will break into a
thousand pieces.There are many people out there
holding on day by day."
To which one can only say, Amen, sister.
"In the past, CDC has ignored us, lied to us-I just
want to really bring home the hurt," said one caller
who spoke in a halting, choked voice. "I remember a
couple of years into it. I was in my car, writing a
suicide note. I only didn't do it because I thought
about my kids." After which, there was silence while
he composed himself. "I want you to think long and
hard." he added.
"Thank you," Becky said after waiting a decent
Not surprisingly, over the course of the afternoon the
tone moved from sophisticated criticsm, to hurt and,
eventually, to barely suppressed rage. If CDC had
any motives other than to solicit "input" on their
slap-dash five year plan, then allowing the steam to
rush out of the pressure cooker must have been
among them, and that is what happened.
From the even-tempered, watchful Craig Maupin, who
misses nothing: "Reeves has worked diligently with
the military on stress research. His passion for stress
research is commendable. He should follow his
And this from a veteran of the disease: "For twenty
years I have had chronic EBV, chronic mycoplasma,
and chronic HHV6. CDC has consistently failed to find
HHV6 in CFS. Meanwhile, the CDC has recognized the
swine flu outbreak and is working on it in a matter of
"CFS is an infectious illness," the speaker contined.
"The CDC has watered down the definition so that it
bears no relationship to the disease. The agency
should model its research after the
Whittemore-Peterson Institute in Nevada. "[Instead]
it's calling people in Georgia twenty years later to ask them if they're tired. You are wasting taxpayer dollars. Adopt the Canadian definition, adopt the WPI methods, including viral research, and stop characterizing CFS as a psychological disorder."
And another old-timer: "We have been terrorized by
this illness, but no one seems to care that much.
We've experienced foreclosures way before the
normal population has. We can't work, we can't play.
We've lost our identities-it's devastated every area
of our lives. We need our doctors, our neighbors, to
know we're not lazy or crazy. Maybe until the CDC
can find solutions, they can at least educate."
And from seemingly out of nowhere emerged Dr. Fred
Volinksy on dial up, an authoritative person with an
exhilarating attitude who called in once, and then
again, the second time demanding the firing of
"We want new leadership for this program!" he said.
"Twenty years without any progress! You have at
least one to two million patients with CFS-and no
money!..I'll be absolutely disgusted if we have the
same leadership here," Volinsky continued. "I need to know which senate committee has oversight over the CDC."
Becky was put off her stride. "Are you through Mr.
Volinksy?" she asked after a minute in her
"No! I'll never be through!" Volinksy replied. "This is
an example of the whistle blower law being used in a
very unethical way," he said in a reference to Reeves'
invocation of the Federal Whistle Blower Act.
You'll recall that after the news was everywhere and
about to break in the Washington Post in 1988,
Reeves stepped forward and began spilling his guts
about the CFS slush fund. That was almost two years
after I broke the same story in Osler's Web, but
who's counting? The point of the Act is to encourage
ethical conduct in government. Volinsky was implying
the obvious: Reeves used the Act to hang on to his
For the record, the Senate and House subcommittees
that have oversight over CDC are the subcommittees
that appropriate money to the Department of Health
and Human Services. History shows they are easily
deceived by, and frequently in awe of, government
Patricia Blankenship was another whose heartfelt,
thoughtful remarks kept the bar high for these
proceedings: "I've been in this fight for years," she
said. "I've testified for years-the things we've been
asking for all those years-there are no treatments,
no medical markers, the physician education is a
joke, there is no outreach to medical schools.
Doctors should not have to learn what is going on
from paper we've printed out from the internet that
we bring to them.
"I have very little confidence that CDC is going to
make new breakthroughs or help the patient
community, because the same people are at the
Scott Royal, who is the current project director for
Abt Associates, the contractor that was first hired by
the agency in 1988 to conduct surveillance and has
made ungodly amounts of money from the agency's
"CFS" boondoggle ever since, was the jolliest of
those who spoke. "Participation in our Macon
(County) clinics is very positive (for patients) and
provides validation to them that their experience is
real...The mere fact that CDC is funding this
research," he said, sounding a little choked up
himself, empowers patients because it makes them
aware that their disease must be important.
Another superfluous piece of flotsam from an agency
employee/conractor. Royal describes himself as a
"social and behavoiral epidemiologist" on his resume
and has a masters in public health. He is credited on
the Abt website for being "instrumental in designing
and implementing a strategy that has significantly
built the Abt Associates porfolio of work at the CDC."
In fact, Abt Associates opened an office in Atlanta in
July of 2008, an office that I'm guessing was built
with a lot of "CFS" research money.
To Royal, I would simply say, I don't believe patients
are looking for empowerment from the CDC, the very
folks who helped disempower them, nor are they
looking for validation that what they are experiencing
is "real." Only a CDC pod person could infer, in 2009,
that patients are in a state of uncertainty over the
reality of what has happened to them.
In my experience, patients are looking for rational,
competent, scientific research. And if the agency
didn't hear that this afternoon, it never will.
So, in addition to my sentiments expressed above, I
think the CDC should get out of the empowerment
And to those who braved the wear and tear of this
remarkable afternoon, I would like to say, "Group
Be the first to comment:
Thursday, May 21, 2009
Whenever the subject of disability benefits comes up, there's a lot of screaming about "fraud". In fact, after a lengthy and expensive investigation, Connecticut found a whopping six cases of disability fraud in the state; not likely they'll ever recoup the cost of rooting out that fraud through the savings of terminating half a dozen people's meager benefits.
Wednesday, May 20, 2009
New data released by the CDC Tuesday showed that the majority of the 30 patients who were hospitalized with H1N1 in California had other medical conditions, such as chronic heart and lung disease, suppressed immune system, diabetes, and obesity. None of the patients died.
They had fevers, coughs, vomiting and shortness of breath, according to the CDC report that examined the patients. Six of them were admitted to the intensive care unit and four required mechanical ventilation.
Five of them were pregnant -- two of the fetuses did not survive.
A sample of 30 hospitalized patients with H1N1 had the following chronic illnesses:
Chronic lung disease 37 percent
Other immunosuppresion 20 percent
Chronic cardiac disease 17 percent
Diabetes 13 percent
Obesity 13 percent
Seizure disorder 17 percent
Monday, May 18, 2009
Just thought I would pass on to the support group that we are nearing an interesting date. The FDA was supposed to give a decision about 3 months ago and they extended the deadline until May. I believe they wanted some more information from the company that makes the drug.
I'll keep you posted.
Dr. Montoya at Stanford has had success in treating CFS patients with an anti-viral which is already FDA-approved for another virus, and a member of my online support group, who didn't have the $1100 a month for that one, improved somewhat on a related anti-viral that's only $200/month. So, there are ways to get around the FDA's refusal to approve Ampligen, but only if you have a doctor willing to prescribe Montoya's drug off-label, and only if you have one of the viruses it works on (which not all CFS patients test positive for).
Fingers crossed that this time, there's enough evidence that CFS is a viral illness and not purely psychological, that the FDA will approve Ampligen on this go-round. But I'm not holding my breath.