Monday, December 31, 2012

Ampligen Petition

The FDA is deciding over a New Drug Application for the drug Ampligen for
CFS. Ampligen is the only drug up for approval in the foreseeable future.

On Dec 20 an Advisory Committee voted with 8 votes NO and with 5 votes YES
against a recommendation for approval for Ampligen. The FDA can override
the recommendation of the committee, but it is rare.

A petition to the FDA is currently being circulated: http://www.ipetitions
.com/petition/ampligen/

Additional information can be found here:
http://www.facebook.com/people/Robert-Miller/1158453626

Sunday, December 30, 2012

Specificity about bad reactions to GET

I sometimes come across people who have difficulty believing anyone
has ever suffered significant or long-term problems from a Graded
Activity Therapy (GAT) or Graded Exercise Therapy (GET) program.

And, indeed, although surveys mention numbers, they have generally not
included extra individual details. I think more examples need to be
recorded.

I included a few in:
----------
Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy
and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic
Fatigue Syndrome. Bulletin of the IACFS/ME. 2011;19(2):59-111.
Free at: http://bit.ly/T3suWA i.e.
http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx
(and could have included some more from the same source)
----------

Here are a few Jane Colby @JaneCColby posted on Twitter on Dec 27,
2012. Jane has been running the UK-based charity, The Young ME
Sufferers Trust (Tymes Trust) for over a decade:

- "Consultant paediatrician referred 2 severely ill kids to 'expert'
who set graded activity program. Children so ill he said it was a
mistake."

- "A doctor in the North prescribed GET for a girl who became so weak
she had to be tube-fed for many years. He apologised. #CFSME#neuroME"

- "A doctor (now retired) used an exercise bike for a child with ME.
He apologised when, to his consternation, she became very ill as a
result." (third one needs more details)

Tom (@TomKindlon)
 
* * *
I can add my own.  Several years ago, I was feeling enough better to take on the doctor's challenge to take a walk every day.  Each day, I walked the same distance, from my house to the nearby Safeway, picked up something for lunch, and walked home.  Each day, I collapsed for even longer after this short walk, until the end of the first week when I couldn't get out of bed without crumpling to the floor. 
 
Since the doctor had not been inclined to believe my assertions based on experience that exercise makes me worse, this time I took very good contemporaneous notes of how long I had to rest before I could get to the kitchen to eat what I'd bought for lunch, which symptoms got worse, etc., to prove that I wasn't mis-remembering, exaggerating based on mistaken memory, etc.
 
 

“2013 will be a year of optimism, opportunity and HOPE” | X Rx Blog

 
Update on Dr. Judy
 
 

Saturday, December 29, 2012

Cort Johnson says Goodbye (sorta)

Change happens..It's a fact. We all know very well we can't predict the
future and this was not predictable but eight years after creating Phoenix
Rising I'm moving on...to a new site. The research, treatment and advocacy
blogs will continue there.

Find out what happened here and what the future holds in store in

*Cort Johnson Says Goodbye to Phoenix Rising and Opens Up New Site*

http://www.cortjohnson.org/blog/2012/12/29/cort-johnson-says-good-bye-to-phoenix-rising-opens-up-new-site/

Friday, December 28, 2012

THE NICEGUIDELINES BLOG: Dutch doctors blunder by dismissing sympto

 
 
Another death due to medical neglect.
 
Once you get the CFS diagnosis, everything is attributed to "all in your head".  They miss things that can kill you.
 
You die, not of CFS, but of something that could have been cured if doctors were willing to treat you like every other patient, rather than an over-imaginative hypochondriac.
 
 

Saturday, December 22, 2012

Enlander Protocol

 
What does Dr. Enlander prescribe? Things like Hepapressin, Neurontin, Naltrexone, Valcyte, nutritional supplements.

FREE BOOK TODAY AND TOMORROW


 
When the first edition of Chronic Fatigue Syndrome: A Treatment Guide was completed we were asked what we would do with the manuscript if a cure was found before the publication date. "Burn it!" we said. We weren't being naive. The late nineties were a heady time for CFS advocacy and support groups.
 
Verrillo, Erica (2012-09-14). Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Kindle Locations 530-532). Erica Verrillo. Kindle Edition.
 
 
If you don't have a Kindle, you can get Amazon's free Kindle for PC app.
 
* * *
Like Erica, I naively believed that a cure was just around the corner.  I was diagnosed by an Ivy League-trained virologist ... when someone like that says "I'm working on it", you believe in miracles.
 
25 years later, I am no longer naive and I no longer believe in miracles.  I now believe that the only way we're going to get a cure is patient power.  DIY.  OK, not so much "do" it yourself as Fund It Yourself.  There are some good research programs from people we trust -- Dr. Enlander at Mount Sinai in New York and Dr. Peterson at Simarron in Nevada -- where we can send our money with full faith that they're investigating ME/CFS and not some psychobabble.

FDA Panel Considers First Drug for Chronic Fatigue Syndrome

 
 

Chronic fatigue syndrome is little understood, and Ampligen's approval would give patients some standing with their insurers, Klimas said.

"Even a single approved therapy, even if it were one I choose not to use, would be very helpful when I am arguing with insurance companies to legitimize the condition and that it is serious enough to require an intervention," Klimas said.

 

* * *

Even if Ampligen isn't approved, at least stories about it are getting the word out that CFS is a legitimate disease.

Invisible Illness: When Others Can't See Your Pain - Pain Managemen

Friday, December 21, 2012

Hopes on a miracle

The article below was published in Norway's biggest print newspaper, A
magazine, on Dec. 14, 2012. (Google English translation below)

---------------------------------------------------------

A Magazine Dec. 14, 2012

Original text (in Norwegian)-
http://me-foreningen.com/meforeningen/innhold/div/2012/12/ME-A-magasinet.pdf

Hopes on a miracle
Desperate Norwegians travel to California for treatment-with same
cancer medicine looks to cure CFS patients in Bergen.


Maria Gjerpe is 44 years and has had ME since she was 16. For just
over a half ago she lay under the covers 21.5 hours a day. Now she
sits full of pep at Haukeland University'cancer ward. In the hand, she
has a cannula in face a wide smile and eyes that glows. Beside her
stands chief Øystein Fluge and oncology nurse Helle Øvrebø. Rarely do
they see so striking transformations in patients.

- When you came here for the first time in April, it was as far as we
got up from the wheelchair to the bed. You were shaky, unwell and very
difficult to talk with, recalls Øvrebø.

- I hardly remember it. All that concerned was to survive, replies Gjerpe.

This is the fourth time she's in Bergen to be given the cancer drug
Rituximab. Earbud and the dark sunglasses she wore on her first,
exhausting journey from Oslo, she long since put away.

- How's it going? ask Fluge

- I must exert myself for not only a grin: I am perfectly well!

- How is your activity level?

- I go for walks in nine miles, without break and without getting
tired. I read, lectures and writes feature articles, reply Gjerpe
proud. In better times she has been able to train as a doctor, but it
took her 12 years.

- There is no longer any doubt: You approaching complete response to
medicine, concludes Fluge, while Nurse Øvrebø almost feel honored.

- I did not like this was possible. It's incredibly nice to be with
when people get their lives back. I had no idea that so many suffered
so terribly with ME, she says.

STUMBLED INTO. It had no powers over Øystein Fluge and his colleague
Professor Olav Mella either, until they observed something surprising
in 2004: A woman with ME had lymphoma and was treated with four
different chemotherapy regimens. Six or seven weeks out of one of
them, she was suddenly temporarily relieved by ME symptoms.

Doctors analyzed cell poisons she had received and decided that it was
probably a drug that affects B-cells (a type of white blood cell),
which had had the unexpected effect of ME disease. After she recovered
from cancer, why they chose to give her the cancer drug Rituximab,
which targeted reducing the number of B-cells.

Mella and Fluge knew that Rituximab also be applied to autoimmune
diseases such as rheumatoid arthritis and lupus. Could it be that the
"mysterious disease" ME belonged to the same category?

Having seen the response in another two pilot patients, implementing
the a small, double-blind study. 15 ME patients received within 14
days two infusions of Rituximab, as many received only saline
(placebo), and neither the doctors nor the subjects knew who got what.

The results of the study were published in the medical journal PLoS
One last fall and attracted attention world over 10 of the 15 who had
received Rituximab, were significantly better. But jubilation over the
breakthrough was not unanimous.

SHOCK. Ignite a peppery, roll in a minefield and pour gasoline on the
fire. About as explosive, the Norwegian ME debate.

In one corner: those who believe ME / CFS is a psychosomatic illness
that can be cured with cognitive techniques such as Lightning Process
(LP) or mindfulness. In the other: those who argue that ME is a
clearly defined physical diagnosis that will be cured as researchers
find biomarker and forensic medicine.

Duellantene lashed out swing punches to beat counterpart knockout.
With the imminent danger to frame even those who have inadvertently
ended up somewhere in the middle.

People like Mella and Fluge.

- Our field is cancer. We had no idea how inflamed ME discussion is.
Fasten a ME conference in London sat patients and hollering and
whistling at debate panel. That aggression is not exactly accustomed
to cancer conferences. But there also experiencing the patients to a
greater degree to be taken seriously, says Mella.

- I stay away from all the noise on the Internet, avoid google ME and
chronic fatigue syndrome.

War of words is just distracting. I understand why we are taken to the
income a purely biological view, but that is to underestimate us. The
psychic and the physical hangs course together, says Fluge.

CALIFORNIA DREAMIN '. After their study became known last year, Fluge
Mella and received over 500 inquiries, many of them utterly
heartbreaking, from ME sufferers who desperately want to try
medication.

- I am almost sick when I read. It is lidelseshistoríe by
lidelseshistoríe, but it gives inspiration to work on this, says
Øystein Fluge.

Some medicine he can not offer those who contacts. It can, however,
the American physician Andreas Kogelnik at the Open Medicine Institute
outside San Francisco. He has begun to accept Norwegian CFS patients
for examination and treatment.

- We have been contacted by over a dozen Norwegian patients, and a set
of them are now participating in our studies, says he to A magazine.

One of them is "Maya". She lives in Oslo Area, is 28 years old, has
had ME since she was 16, and the last four years the disease has taken
over her life. She is partially disabled, has at times been in need of
care, and she knows that for every helpless today as yesterday, be
more dreams in ruins.

She believes that medicine made her a little better, but that the
effect slackening journey is so insanely exhausting. In January, she
travels back in the wheelchair and companion, for another infusion.

- I have to pay for this with loans all sides, which puts me in a
future financial difficulty. I no guarantee that the treatment going
to work, and it is therefore an immense physical strain to travel so
far. Yet I have not really been in doubt. I think no one in my
situation would have been.

For not only is life put on pause; she also fear being regarded with
suspicion at all levels, that many believe she only makes itself. It
is not to endure.

- I can not let this stand untested. For the chance to get myself and
my life back, I am willing to sacrifice everything.

FRUSTRATED. In Mid-Norway live "Unni" another of Kogelnik's Norwegian
patients. When Fluge and Meller study published last fall, was
23-year-olds hope. That soon was turned to frustration.

- To know that there was a medicine that might help me, but I at best
to wait for several years to make, was cruel. I want the to live a
life now!

At Christmas last year, she started and family to probe the
possibility of â Rituximab get outside Norway. They knew it would cost
enormously, both of money, time and effort, but decided to let it rip.

- For me it would have been luxury to take the mail without any
problems. At times I have to lie down and recuperate for â grab a
glass of water. Travel to California seemed impossible. In addition
did we that I could end with no response or with serious side effects.
Yet I decided to try.

So far she has been three times in Kogelnik. Without getting better.
The last month is she on the contrary become much worse.

- It's awful tough. I do not know about deterioration due to
medication. But I try to keep up hope.

The next visit is scheduled for January. The family has already spent
over 200,000 dollars on travel and treatment. Unni knows she is lucky.

- There will be a class distinction between ME patients either alone
or with family's assistance may buy assistance and those who can not
afford. I think it is incredibly unfair.

NOT MYSTERIOUS. Since the first study of its fame in October, have the
verbose enthusiastic Bergenser Fluge and Mella, which carry serenity
of his home district Kongsvinger deep forests, conducted a open-label
study of 28 patients who know that they receive Rituximab.

The results are not yet published, but at conferences, there have been
shows that also in this study, approximately two of the three
participants significantly response. Kogelnik report corresponding
payout on their patients, and says that he is now of organizing a
double-blind and placebo-controlled Rituximab study at six or eight
international research centers.

- I will get back to coordinate with Fluge and Mella, he assures.

Meanwhile, only two of the ten recovered in Fluge and Mella's first
study avoided relapse. Much suggests therefore, the medication must be
taken over a long time, as it is used by people with arthritis.

- If the ME is an immunological disease, so we believe it will be the
rule, says Mella.

But this is also a disease that can be cured with mental coping
techniques? Mella and Fluge invalidates no experience of ME sufferers
who after three days of Lightning Process Course gets up from the bed
and declares healthy, but tries to balance them against their own
Rituximab studies.

Their theory is that CFS symptoms not always directly caused by the
underlying disease.

- We know that especially in the frontal lobe brain through very
active thinking can affect and suppress the involuntary nervous
system. That's probably a major reason for the LP and other extreme
forms of cognitive treatment can provide as rapid effect. For some
lasting effect, and then probably the underlying disease state "Burned
out." In others effect of such techniques are at best transient. When
we believe that the underlying cause, the disease state, probably
still present, explain Mella.

NOT EXPERTS. Many other question remains: Why respond some of
Rituximab after six weeks, others for six months? And what about those
who do not have known effect at all, neither in the first or second
trial?

Plays possibly immune system T-cells a larger role than B-cells with them?

- We try not to appear to be experts on ME. Both our studies has clear
weaknesses: The first was small, the other is open and without the
placebo group. But we are quite confident that we have fallen into
something that is true, says Mella.

- A mysterious illness is not. When their mechanisms underlying
available, we think, of course, that's it! For we know that Rituximab
works, what remains is to find definitive answer as to why, adds
Fluge.

COLLECTION. That's why searched the Research Council for nine million
to implement a large, double-blinded and randomized national study in
140 ME patients next year.

Last week came the answer: 34 projects of more than 400 applicants in
health, medicine and biology were awarded a total of 234 million.
Mella and Fluge were not among them.

The reactions were not long in coming. Patients and families
desperately, Ema Solberg called the decision sad, both Maria Gjerpe
and ME Association announced that it would start rolling penny, a
upset Laila Dâvøy (KrF) rushed right the Parliament's rostrum and
demanded that the government immediately allocate 9 million, and
Health Minister Jonas Gahr Støre expressed surprise the Research
Council's decision, however, without giving binding promises.

The only ones who seemed to make the decision calmly, was Mella and Fluge.

- It actually came as no big surprise. There were many very strong
candidates, and we had under 10 percent chance of getting a yes. But
we continue to plan our study. I'm sure there will be funds
eventually. There is appropriated two million both this year and next
year budget, and with time we will have accumulated enough money. For
Fluge and me this is not a tragedy. But it's a pity for the patients,
said Mella. oIa.henmo@aftenposten.no

------------------------------------------

Zumba Dancer

Lene Loe (39)
Married, two children

I've had ME since 2007. When I got the offer to participate in the
first study to Mella and Fluge, I lay in my room, full of anxiety,
despair swell. They could offered anything.

I had nothing to lose.

As month after month passed without any thing happened, I was sure I
had received placebo. But then. After about six months, it began to
ease.

It lasted not. One year after infusion, I was almost back where I
started. Fortunately I got Rituximab again from the autumn of 2010,
and experienced exactly the same: After six to seven months I was
better. I, who had not been in town for years, endured the sudden both
light and sounds.

Now I have received infusions of between three and six month
intervals, the last in February, and shape improvement has been
remarkable. I am back at work as a teacher, zumba dancing and going to
yoga. I have nearly repressed how sick I was.

----------------------------------------

Up and down and up and down and up

Mariann Ripel (41)
Married, three daughters

- I was one of those who received Rituximab in Mella and fly first
study in 2008. The effect came after just seven weeks. I got better
and better. Started to go for walks and socialize. It lasted approx.
six months.

Then it turned.

In 2009, I join the second their study. The same thing happened this
time, but now I got multiple doses, and progress only continued. In
January 2011, I received the last dose. Then I had ten months without
recurrence. So said the pang.

Within two months I was back in the bottom.

In January this year, I luckily be the pilot for the next trial, and
history has repeated itself. It is just not possible to say that this
is a coincidence. Now I work 40 percent as a nurse and has begun to
further study to be a nurse.

The way it looks now, I can not continue on the medication forever. I
hope that the disease burns out, and try not to think that I can get a
new relapse. No one knows what the future holds, I can in a car
accident tomorrow, and I refuse to take your sorrows in advance. I
have one infusion again. After that I have at least ten good months to
look forward to. Those I enjoy.

-----------------------------------------

Newly saved

Hanna (30)
Married

When I was in the first study, I slept up to 20 hours a day, was dizzy
and nauseous. I had a huge hope that medication would help, but knew
that it was 50 per cent chance that I was given medicine without
substance. Then after a year I was informed that I had received
placebo, I was so happy. Then I knew you it was still likely that the
medicine would work on me.

I got to be involved in the maintenance study in 2010. Mella and Fluge
said it probably would not take long before I noticed any response, so
I was not really waiting, but after infusions in October and November,
I knew that something was happening in the body. Suddenly, I was
refreshed after sleeping. After a few weeks I asked my husband if we
were to walk, and so it has continued.

I will say that I'm 100 percent healthy. I have finished Master degree
gave-my friend and is working full time, but I have not told about the
disease to my bosses. I fear that it will cleave to me if I seek new
jobs. Therefore, I will remain anonymous in A magazine well. There are
many prejudices ME. Many people think that it is really just to pull
himself together.

I can only imagine how painful it is to read about people like me, for
those who do not get medicine. I've got my life back and hope that
everyone gets this chance. I seems certain newly saved, but it's so
wonderful to live and work normally. Now I've been healthy for two
years. I am no longer afraid of relapse. This is going to hold.

Advisory Panel recommends No on Ampligen

http://online.wsj.com/article/SB10001424127887324731304578191951426646118.html

December 20, 2012, 6:52 p.m. ET

Panel Rejects Drug for Chronic Fatigue Syndrome

By JENNIFER CORBETT DOOREN A federal advisory panel on Thursday said a
proposed medicine from Hemispherx Biopharma Inc. HEB -5.26% to treat
chronic fatigue syndrome isn't ready for approval, dealing another
setback to the drug maker.

Hemispherx Biopharma is seeking approval from the U.S. Food and Drug
Administration for the drug, Ampligen. The product, which been in
development for more than two decades, was reviewed Thursday by the
agency's arthritis-drugs advisory panel, which is made up of non-FDA
medical experts. In an 8-to-5 vote, the panel said the company didn't
provide sufficient data to support the approval of Ampligen. The vote
amounts to a recommendation that FDA not approve the drug.

Several panel members said they struggled with their decisions because
it appears the drug works in certain patients even if it wasn't
strongly shown in the clinical data presented to the panel.

"I think the advisory panel in general hopes there will be an
effective drug and hopes this might be the drug" for chronic fatigue
syndrome, said Lenore Buckley, the panel's chairwoman and a professor
at Yale School of Medicine. "We are interested in seeing more data." A
decision by the FDA on whether to approve Ampligen is expected by
early February.

Almost three dozen patients or family members testified in person or
via video before panel, urging them to approve Ampligen. Anita Kathryn
Patton, who's had chronic fatigue syndrome for more than 20 years, was
first given Ampligen in 1997.

"It was like rising from the dead," Ms. Patton said of her disease
improvement. She and some other patients are receiving Ampligen
through a special access program at a cost of about $25,000 a year.

At issue is whether Ampligen, which is the drug's proposed brand name,
is effective and safe. The FDA said there was missing data in clinical
studies that made it hard to tell whether the drug is safe. Potential
safety concerns include infections and liver problems. FDA medical
reviewers questioned whether the data meet drug-approval requirements
demonstrating "substantial evidence" of safety and efficacy, or
effectiveness.

Theresa Michele, an FDA team leader, said the agency believes that
chronic fatigue syndrome is a serious disease that needs treatments,
but said clinical studies submitted in support of products have to
meet federal drug approval standards showing "substantial" safety and
effectiveness. "We have to be certain a drug works and we clearly know
what the risks are," Dr. Michele said.

The FDA and the company differed on whether one of the main clinical
studies reached a goal showing a statistically significant test
showing patients receiving the drug were able to walk on a treadmill
for a longer period than patients receiving placebo injections.

The company said on average there was an improvement of about one
minute while the FDA said the difference appeared to be about 20
seconds.

"Regardless of the [measurement] approach there's a consistent pattern
of benefit in the data, which favor Ampligen," said William Carter,
Hemispherx chief executive. At a minimum, Dr. Carter said, the drug
"prevents further disease progression." After the meeting, Dr. Carter
said he had no comment.

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, is
believed to affect more than one million Americans, according to the
Centers for Disease Control and Prevention. The condition is marked by
severe fatigue, muscle pain and memory and concentration problems. It
isn't known what causes the condition and there are currently no
specific treatments.

Ampligen, an injectable drug, is believed to boost the body's immune
system and fight viruses.

Write to Jennifer Corbett Dooren at jennifer.corbett-dooren@dowjones.com

Thursday, December 20, 2012

Men with Fibromyalgia go undiagnosed

Note: Although depression and anxiety are listed as symptoms of
fibromyalgia technically they are separate disorders which can co-occur
with any disease. They may be a normal response to chronic pain. As
always, a common caveat with medical populations is that symptoms that
commonly occur with disease, including fatigue or loss of energy, changes
in sleep patterns and changes in appetite, may be misinterpreted by
healthcare providers, researchers or patients as mood-related particularly
when specificity and severity are lacking


Men with fibromyalgia often go undiagnosed, Mayo Clinic study suggests
December 19, 2012 in Arthritis & Rheumatism

Fibromyalgia is a complex illness to diagnose and to treat. There is not
yet a diagnostic test to establish that someone has it, there is no cure
and many fibromyalgia symptoms—pain, fatigue, problems sleeping and memory
and mood issues—can overlap with or get mistaken for other conditions.

A new Mayo Clinic study suggests that many people who have fibromyalgia,
especially men, are going undiagnosed. The findings appear in the online
edition of the journal Arthritis Care & Research. More research is needed,
particularly on why men who reported fibromyalgia symptoms were less likely
than women to receive a fibromyalgia diagnosis, says lead author Ann
Vincent, M.D., medical director of Mayo Clinic's Fibromyalgia and Chronic
Fatigue Clinic.

"Health care providers may not think of this diagnosis when face to face
with a male patient with musculoskeletal pain and fatigue," Dr. Vincent
says. "These findings need to be explored further."

Researchers focused on Olmsted County, Minn., home to a comprehensive
medical records pool known as the Rochester Epidemiology Project, and used
multiple methods to try to get at the number of people over age 21 with
fibromyalgia. They used the epidemiology project to identify just over
3,000 patients who looked like they might have fibromyalgia:

Roughly a third had a documented fibromyalgia diagnosis. That amounted to
1.1 percent of the county's population 21 and older. In the second method,
researchers randomly surveyed Olmsted County adults using the American
College of Rheumatology's fibromyalgia research survey criteria. The
criteria include the hallmarks of fibromyalgia: widespread pain and
tenderness, fatigue, feeling unrested after waking, problems with memory or
thinking clearly and depression or anxiety, among other symptoms.

Of the 830 who responded to the survey, 44, or 5.3 percent, met those
criteria, but only a dozen had been diagnosed with fibromyalgia. Based on
the study's findings, the researchers estimate that 6.4 percent of people
21 and older in Olmsted County have fibromyalgia—far more than have been
officially diagnosed
with it. Fibromyalgia is more common in women, but men
can get it too.

The discrepancy between the number of people reporting fibromyalgia
symptoms and the number actually diagnosed with the condition was greatest
among men, the study found. Twenty times more men appeared to have
fibromyalgia based on their survey response than had been diagnosed, while
three times more women reported fibromyalgia symptoms than were diagnosed.

"It is important to diagnose fibromyalgia because we have effective
treatments for the disorder," says co-author Daniel Clauw, M.D., director
of the University of Michigan Health System Chronic Pain & Fatigue Research
Center. Studies also show that properly diagnosing people with fibromyalgia
reduces health care costs, because they often need far less diagnostic
testing and fewer referrals looking for the cause of their pain, Dr. Clauw
says.

Read more at:
http://medicalxpress.com/news/2012-12-men-fibromyalgia-undiagnosed-mayo-clinic.html#jCp

Mt. Sinai PEM study is recruiting patients

thank you Erik for adding the Mount Sinai ME Center to your site, ........... we are now recruiting patients for the Post Exertion Malaise (PEM) study which will refute or support the CDC (US) / PACE (UK) concept of exercise treatment in ME and CFS. ...... PEM is a facet of the Canadian Consensus Criteria used in the diagnosis of ME and CFS. We will examine immune status , cytokines, virology, enzymatic changes in major organs and the genome in patients and controls before and after exercise.

Wednesday, December 19, 2012

Which way Ampligen?

Which way Ampligen? Will a 'good' committee be able to overcome a harsh FDA
report? We'll see tomorrow..Check out the latest here:

http://simmaronresearch.com/simmaron-rising/harsh-fda-report-but-good-committee-which-way-ampligen-the-fda-advisory-meeting/
 
 

Monday, December 17, 2012

Misdiagnosis on a grand scale?

Misdiagnosis on a grand scale?
Our editorial in the most recent Breakthrough magazine (Autumn 2012) seems to have stuck a chord, so the text is now available on our website http://bit.ly/RmOw5M

The key point – that many people referred from primary care with a diagnosis of ME/CFS are found to have another, treatable condition when assessed at a specialist clinic – might not surprise patients themselves, since many have already questioned their own diagnosis and/or have had difficulties with the "patient-GP encounter" (for the patient view see http://bit.ly/TqoM61 and for the GP view http://bit.ly/V5myQ9 ). Yet, the accumulating evidence of misdiagnosis on such a scale should be astonishing to healthcare professionals, and ought to greatly concern the NHS as an institution. Something is far wrong, and it needs to be fixed.
 
* * *
I've said the same thing.  Some doctors will never diagnose CFS, no matter what; they'll call it depression even when there are symptoms reported that aren't seen in depression.  Other doctors will diagnose CFS in any patient who's tired, regardless of the reason.
 
Dr. Bell has noted that fully half of people initially diagnosed with hypochondria are eventually diagnosed with something very real that matches the symptoms they complained of all along. 
 
Trust the patient!
 
 
 

Sunday, December 16, 2012

Amitriptyline for neuropathic pain

Note: One of the difficulties in treating pain is that scientists have yet
to develop an accurate "blood test" for pain making it difficult to
objectively measure pain and thus pain relief. And no one drug (or other
treatment) is a miracle for every single person who tries it regardless of
the condition or disease but particularly in areas where there is
diagnostic confusion and overlap.

Cochrane Database Syst Rev. 2012 Dec 12;12:CD008242. doi:
10.1002/14651858.CD008242.pub2.
Amitriptyline for neuropathic pain and fibromyalgia in adults.
Moore RA, Derry S, Aldington D, Cole P, Wiffen PJ.
Source

Pain Research and Nuffield Department of Clinical Neurosciences, University
of Oxford, Pain Research Unit, Churchill Hospital, Oxford, Oxfordshire, UK,
OX3 7LE.
AbstractBACKGROUND:

Amitriptyline is a tricyclic antidepressant that is widely used to treat
chronic neuropathic pain (pain due to nerve damage) and fibromyalgia, and
is recommended in many guidelines. These types of pain can be treated with
antidepressant drugs in doses below those at which the drugs act as
antidepressants.
OBJECTIVES:

To assess the analgesic efficacy of amitriptyline for chronic neuropathic
pain and fibromyalgia.To assess the adverse events associated with the
clinical use of amitriptyline for chronic neuropathic pain and fibromyalgia.
SEARCH METHODS:

We searched CENTRAL, MEDLINE, and EMBASE to September 2012, together with
reference lists of retrieved papers, previous systematic reviews, and other
reviews; we also used our own handsearched database for older studies.
SELECTION CRITERIA:

We included randomised, double-blind studies of at least four weeks'
duration comparing amitriptyline with placebo or another active treatment
in chronic neuropathic pain or fibromyalgia.
DATA COLLECTION AND ANALYSIS:

We extracted efficacy and adverse event data, and two study authors
examined issues of study quality independently. We performed analysis using
two tiers of evidence. The first tier used data meeting current best
standards, where studies reported the outcome of at least 50% pain
intensity reduction over baseline (or its equivalent), without the use of
last observation carried forward (LOCF) or other imputation method for
dropouts, reported an intention-to-treat (ITT) analysis, lasted 8 to 12
weeks or longer, had a parallel-group design, and where there were at least
200 participants in the comparison. The second tier used data that failed
to meet this standard and were therefore subject to potential bias.
MAIN RESULTS:

Twenty-one studies (1437 participants) were included; they individually
involved between 15 and 235 participants, only four involved over 100
participants, and the median study size was 44 participants. The median
duration was six weeks. Ten studies had a cross-over design.

Doses of amitriptyline were generally between 25 mg and 125 mg, and dose
escalation was common.

There was no top-tier evidence for amitriptyline in treating neuropathic
pain or fibromyalgia.


Second-tier evidence indicated no evidence of effect in cancer-related
neuropathic pain or HIV-related neuropathic pain, but some evidence of
effect in painful diabetic neuropathy (PDN), mixed neuropathic pain, and
fibromyalgia.

Combining the classic neuropathic pain conditions of PDN, postherpetic
neuralgia (PHN) and post-stroke pain with fibromyalgia for second-tier
evidence, in eight studies and 687 participants, there was a statistically
significant benefit (risk ratio (RR) 2.3, 95% confidence interval (CI) 1.8
to 3.1) with a number needed to treat (NNT) of 4.6 (3.6 to 6.6).

The analysis showed that even using this potentially biased data, only
about 38% of participants benefited with amitriptyline
and 16% with
placebo; most participants did not get adequate pain relief.

Potential benefits of amitriptyline were supported by a lower rate of lack
of efficacy withdrawals; 8/153 (5%) withdrew because of lack of efficacy
with amitriptyline and 14/119 (12%) with placebo.More participants
experienced at least one adverse event; 64% of participants taking
amitriptyline and 40% taking placebo.

The RR was 1.5 (95% CI 1.4 to 1.7) and the number needed to treat to harm
was 4.1 (95% CI 3.2 to 5.7). Adverse event and all-cause withdrawals were
not different.
AUTHORS' CONCLUSIONS:

Amitriptyline has been a first-line treatment for neuropathic pain for many
years. The fact that there is no supportive unbiased evidence for a
beneficial effect is disappointing, but has to be balanced against decades
of successful treatment in many patients with neuropathic pain or
fibromyalgia.

There is no good evidence of a lack of effect; rather our concern should be
of overestimation of treatment effect.
Amitriptyline should continue to be
used as part of the treatment of neuropathic pain or fibromyalgia, but only
a minority of patients will achieve satisfactory pain relief.

Limited information suggests that failure with one antidepressant does not
mean failure with all.It is unlikely that any large randomised trials of
amitriptyline will be conducted in specific neuropathic pain conditions or
in fibromyalgia to prove efficacy.

FDA to rule on Lazarus Drug

http://www.stamfordadvocate.com/local/article/FDA-to-rule-on-Lazarus-drug-4121250.php

FDA to rule on 'Lazarus' drug
Llewellyn King
Published 4:41 pm, Saturday, December 15, 2012


WASHINGTON --For about a million Americans, Thursday will be a seminal
day. That's when some of them come before the Food and Drug
Administration to petition for approval of a potent and controversial
drug, a so-called Lazarus drug.

The drug, first synthesized by Hemispherx Biopharma, Inc., of
Philadelphia, in the 1970s, is Rintatolimod (tradename Ampligen),
which is used to treat chronic fatigue sSyndrome, also known as
myalgic encephalomyelitis. It is a grim but little-understood disease
of the immune system, resulting in collapse, pain, confusion and
sensitivity to light and noise.

Patients and their doctors want the drug, but there is concern that
the FDA will fault -- as it has in the past -- the scope of the
clinical trials and the documentation of collateral effects.

The FDA is expected to rule early next year.

The sickest of the sufferers, mostly bedridden and some so sick they
have to lie in dark rooms for 18 hours a day, are pinning their hopes
on a drug that will allow them to rise from their sick beds, thus the
Lazarus appellation.

Dr. Andreas Kogelnik, who runs the Open Medicine Institute in Mountain
View, Calif., puts the chances of FDA approval for Ampligen at just 50
percent. Although he is rooting for the drug to be approved, he says
the FDA may require more data on collateral effects. This has happened
in the past and the FDA has not been satisfied with previous
applications.

Dr. Daniel Peterson, who has been treating CFS since 1984 in Incline
Village, Nev., said recently that he thinks fewer than 100 people at
any one time, either through trials or compassionate waivers, are on
Ampligen. The drug is only available in a few states, most prominently
New York and Nevada. It is very expensive (about $25,000 for a course
of treatment) and has to be administered through intravenous infusion
-- a long, slow process, at regular intervals.

According to Kogelnik, some patients react poorly right off the bat,
while others show substantial improvement almost immediately.

Mary Schweitzer, a CFS sufferer, said that she can only walk when she
is getting Ampligen. She travels regularly from her home in Delaware
to New York, where Dr. Derek Enlander, who specializes in CFS, is a
major proponent of Ampligen therapy.

Even devout proponents of Ampligen do not tout it as a cure but as a
therapy that helps them move about and approach a kind of normalcy.

Anita Patton, who lives in Nevada, said in prepared testimony for the
FDA: "Ampligen increased my ability to eradicate viruses. I previously
had not been able to walk up the stairs to then being able to exercise
for 19 minutes on the treadmill.

"The joy that even a small improvement can give a person, to be able
to do household tasks or get out of the house and use my body to take
walks, is something that many patients do not have. The quality of
life of a patient with this horrible illness is so difficult not to
care for yourself and have to endure severe pain in muscles and
nerves, being too exhausted to even take a shower or lift my arms to
fix my hair.

"The suffering is immense. Many patients have to lie in bed for 18
hours a day, as I did before Ampligen, needing care and not having a
life of their own. Many patients have lost all friends and family."

When patient activists face the government in various hearings, it is
painfully asymmetrical, it seems to me. The sick tell sad stories of
suffering, loss of love as well as health, while the government people
talk abstractly about patient loads, international disease
definitions, allocation of resources and appear self-important rather
than appalled at the suffering that passes before them.

The patients turn to the government for recognition, but the
government turns them into a statistic.

--

(Llewellyn King is executive producer and host of "White House
Chronicle" on PBS. Email: lking(at)kingpublishing.com.)

How does NIH spend your tax dollars?

Thanks to Lemon Foundation for these links:
 
This is how your tax money got allocated over the years:

http://report.nih.gov/categorical_spending.aspx

I keep this link bookmarked and reference it often.

I think you will find it useful too.

For example, I love how our tax money funded the flu $272 MILLION, whereas patients suffering & dying of "CFS" received $6 MILLION.



ah, the inequities of life.

We must write to our representatives regularly demanding funding. If you don't think you are 'competing' for funding, you would be wrong.


U.S. reps can be found here:

http://www.senate.gov/general/contact_information/senators_cfm.cfm
http://www.house.gov/representatives/
http://www.whitehouse.gov/contact/

* * *
Some years ago, parents complained that their children's disease got only $35 per patient.  I made sure to keep up on that topic to point out that PWCs would be happy to swap places, since we get only $1 per patient (if you believe CDC's estimate of 4M patients in the US).

Saturday, December 15, 2012

Ampligen Meeting 12/20/12 in Maryland

Subject: [CFSupport] Ampligen Meeting in Silver Spring 12/20/12
To: "NOVA CFS/ME, FMS, OI & Gratitude Support Groups" <cfsupport@yahoogroups.com>

Here are two notes we are passing through our list about a DC area event next week pertaining to CFS treatment. At this time, we do not know of anyone in our group who is planning to or able to attend. If interested, please write to the senders Robert Miller or Mary Dimmock for further information or to let them know of your support. Robert can also be reached through his FB page. He has posted to our FB wall so you can find the link to his page at

-Elly


1)

Dear CFS-NOVA,
I am Robert Miller a long time ME/CFS and FM patient & advocate. Next Thursday Dec. 20th, at FDA White Oak campus in Silver Spring, MD, History will be made. A medication will be reviewed by an expert panel for the treatment of ME/CFS. We would like to have as many patients attend as possible. No registration is necessary. I have listed the details below with a link to the FDA website that has the announcement. I would ask that you post on your website or contact your patient community with this invitation.
You can use my contact email 511bobmiller42@gmail.com for anyone who has questions. We have patients coming from across the U.S. to give public testimony. Your support would be greatly appreciated. I have hundreds of patient testimonies to present. If you have patients and/or family who would like to send in their testimony, they can email it to me at the above email address and I will present it with my testimony. I will also post a template email below so patients and/or family can use it as a guide.
Thank you,
Robert Miller
URGENT: December 20, 2012: Arthritis Advisory Committee Meeting Announcement

FDA Agenda

The Advisory committee will discuss new drug application (NDA) 22151, rintatolimod injection (proposed trade name AMPLIGEN) submitted by Hemispherx Biopharma, Inc. for the treatment of patients with chronic fatigue syndrome.

To All ME/CFS and FM Patients living in the DC, Maryland and Northern Virginia area and beyond. On Thursday, Dec. 20th, from 8:00 a.m. to 5:00 p.m.The FDA Advisory Panel will be Meeting to review a drug (Ampligen) for the treatment of CFS/ME.
This will be the "First" drug ever reviewed by an advisory committee for the treatment of CFS/ME. Your presence at this meeting is invaluable. Patients (some are Ampligen some are not) are flying in from across the U.S. to give testimony at a great cost (not speaking of finance). As patients, you understand how limited and valuable our time is with family, many of these patients are dedicating their Holiday family time to this meeting.
We Need Your Support at this meeting. You "do not" have to register to attend, just bring photo I.D. Come and show the advisory committee and the FDA that we need and deserve treatments. Show them that this disease is serious and life threatening to us all. Your attending will speak Volumes. Ampligen approval will legitimize CFS/ME in the minds of the Medical Community. This potential approval is a Game Changer for all ME/CFS Patients. Please come and be a part of ME/CFS history with your "A C T I O N". Link for location and time below. For those with limited ability to attend, you can come at Noon, prior to Public comment and stay as long as you can. The committee will vote at the end of the meeting at 5:00 pm

Info FDA Website: http://www.fda.gov/AdvisoryCommittees/Calendar/ucm324972.htm
Send To: Email address: 511bobmiller42@gmail.com
Subject line: Ampligen-Treatment for Chronic Fatigue Syndrome CFS/ME

To The Advisory Committee Reviewing Ampligen:
My name is _____________, I have had CFS for more than ___ years. Before I became ill I had a life that was____ your story here__. My life since having CFS has been __your story here_.
After 3 decades, We Need treatment. We deserve treatment and the ability to access it. Just like AZT for AIDS, Chemo for Cancer, Tysarbri for MS or Benlysta for Lupus. We are not second class patients. Reality of CFS, it is Serious and Life Threatening. According to CDC studies, CFS is comparable to MS, AIDS, Lupus, Rheumatoid Arthritis, Heart Disease, Renal Failure, COPD and Chemotherapy. CFS/ME effects every moment of my life. We've seen and heard of patients responding to Ampligen. Give patients Hope by approving Ampligen. We want our lives back.
Thank you,
Full Name
Address Here
Thank you all,
Robert Miller ME/CFS-FM patient/advocate

———————————————————

2)

Hi

My name is Mary Dimmock and I am part of a group that is trying to insure that we have adequate patient representation at the FDA advisory meeting to consider Ampligen. The meeting is on Dec 20 and is in Silver Spring, Maryland.

Given that some of your members may not be far from that facility, we wanted to check and see if you know of any patients that will be there and if you havent already, if you would be able to provide information to them. If you haven't already but are willing to send out information, the following may be useful.

Thank you in advance. I appreciate it
Mary
  • What: Ampligen is being presented in front of the Arthritis Advisory Committee which is a result of consolidating the review of all drugs for ME/CFS under one division, the division of Division of Pulmonary, Allergy and Rheumatology Products. Additional information can be found here: http://www.fda.gov/AdvisoryCommittees/Calendar/ucm324972.htm
  • When: Dec 20, 2012 from 8:00 am to 5:00 pm
  • Where: FDA White Oak Campus, Building 31, Great Room (Rm. 1503), White Oak Conference Center, 10903 New Hampshire Avenue Silver, Spring, Maryland
  • Getting there: The Metro 'Red Line' goes to Silver Springs. From there, you need to take a bus or a 20 minute taxi to the FDA campus. There is also a bus that operates in the morning til about 9:00 but you will need to walk up a hill to get to it. Further details can be found here
Mary Dimmock < maryedimmock@yahoo.com >

———————————————————

Friday, December 14, 2012

How normal fatigue differs from CFS

Note: The article below is the corrected version of an earlier one. After
an activist alerted Dr. Jason to errors in the story, he contacted the
reporter and together they worked to correct the mistakes. The article
erroneously stated among other things that "Sleepiness can turn into
chronic fatigue syndrome." Dr. Jason did not say that. The error was
inadvertently introduced during the editing phase.

Please note that from time to time in any article on any subject there can
be errors introduced by an editor who is working on deadline to strengthen,
clarify and potentially shorten an article. Errors are not intentional and
in most cases publications are more than happy to work with a source to fix
such errors. ( This is not the same thing as a source being correctly
quoted, but the reader disagrees with the statements made by the source.)

*
*

*Prevention News*
How Normal Fatigue Differs From Chronic Fatigue Syndrome How Tired Is Too
Tired?

What your fatigue could really mean

by Markham Heid
<http://www.prevention.com/health/sleep-energy/how-normal-fatigue-differs-chronic-fatigue-syndrome#ixzz2F3cqLWQG>

If you're like a lot of people, the last time you hopped out of bed with a
spring in your step was Christmas morning when you were five—and you were
probably tired then, too. Whether it's your nutty schedule, a cat who won't
let you sleep for more than five consecutive minutes, or plain old stress,
it's usually pretty easy to see why you're dragging. Except when it's not:
New research warns that feeling fatigued too often can be a sign of some
eye-opening problems.

Chronic fatigue syndrome (CFS) is a mysterious condition characterized by
ongoing feelings of sleepiness that aren't alleviated with more rest, and
don't seem linked to other health problems. And while researchers have yet
to nail down the cause of CFS, a new study, published in the *Journal of Psychotherapy and Psychosomatics*, suggests that chronic inflammation might actually be behind the problem.

So how can you figure out whether your tiredness is CFS? Keep tabs on how
often you suffer from daytime lulls, says CFS expert Leonard Jason, PhD,
director of the Center for Community Research at DePaul University. Fatigue
for short periods of time is normal, whereas fatigue that lasts for days or
weeks is not.

"If you take a vacation from work, or spend a weekend catching up on sleep,
you should feel better," he says. If that doesn't help, then the issue may
be more serious, he says.

Read more:
http://www.prevention.com/health/sleep-energy/how-normal-fatigue-differs-chronic-fatigue-syndrome#ixzz2F3cbAUVb

PACE and the 27 Signatories

PACE and the 27 Signatories

Susanna Agardy

To The Independent

Re: Letter concerning Chronic Fatigue Syndrome/ME by Dr Esther Crawley et al, 2 December 2012
http://www.independent.co.uk/voices/letters/ios-letters-emails--online-postings-2-december-2012-8373777.html


I refer to the above letter in defence of Prof. Wessely. Its contents
should be seen in the context of Prof. Wessely's central role in the PACE
trial and its promotion, and his recent media offensive against ME/CFS
patients. Patients are not trying to discourage specialist clinicians from
entering the field, particularly ones with appropriate qualifications. They
just don't want inappropriate treatment forced on them. The PACE study
warrants careful examination.

Regardless of how many psychiatrists and other medical professionals sign a
letter to newspapers, the fact remains that about 70% of participants in
PACE did not reach 'normal' results
, even by the convoluted definition of
'normal' in the study. The study does not report a single participant returning to their pre-illness lives (unless this information still awaits publication). Why would ME/CFS patients clamour for a treatment based on
such a study? Besides, they already know that their condition is not
amenable to the proposed treatment
by Cognitive Behaviour Therapy
(CBT) and Graded Exercise Therapy (GET).

Amid the celebration of some 'moderate' improvement in the 30% of
participants and the promotion of PACE as a treatment, the 70% have been
forgotten. (I use the term ME/CFS because at least 51% of participants
reportedly had post-exertional malaise, the major symptom of ME. This
indicates that the intended use of the Oxford Criteria failed because it
did not exclude conditions which do not form part of the definition.)

In the discussions about PACE we do not hear much about the results of the
6 minute walking test, the only objective measure of physical ability in
this trial. The best average results for this test were 379 metres for the
GET group, up by 67 metres and 354 metres for CBT, up by 21 metres. By
definition, some patients would have produced worse results. At the start
of the trial these participants were assumed to be merely deconditioned due
to fear and activity avoidance. They had an average age of 38 years and
received encouragement and training for one year at the average cost of
about £7,800 per head. While those in the GET and CBT conditions fared
better compared with the other study conditions, the big picture is that
they achieved a poor training effect which is well surpassed by patients
with diseases recognised as serious.

The PACE patients' walking distance was less than 400 metres, worse than that of patients awaiting organ transplantation. In a study of patients
with pulmonary disorder (including those needing supplemental oxygen) the 6
minute walking distance was, on average, 60 metres more than that achieved
by participants in the GET treatment in the PACE trial. A distance of 518
metres has been considered abnormally low for healthy elderly people
.
Moreover, there is no report of any assessment of the possibly delayed after-effect
of the walking test in PACE, a most important measurement of ability in
people with ME. How is it that the poor results have been overlooked by
all the medical professionals defending the PACE trial?

Aren't the signatories and other defenders of PACE curious to know why
there was not greater improvement found in the trial? Don't they want to
know what factors held back the performance of these participants?

The hypothesis of PACE was that patients become deconditioned due to fear
avoidance
and unhelpful cognitions. The consequent exercise avoidance leads
to physiological changes. This theory incorporates several assumptions.
Firstly, it is assumed that ME/CFS patients harbour a fear of activity
which is irrational. This is merely a preferred interpretation which is an
alternative to accepting that patients are responding in a responsible way
to their physiological needs. They know from experience the symptoms
instigated by what is for them excessive activity.
Secondly, there is an
assumption of a causal connection between any such hypothesized fear and
lowered activity and the resulting unspecified 'physiological changes'
which are assumed to occur through some unspecified mechanism. The
physiological changes are also assumed to follow, rather than precede, due
to some other cause, the stated psychological reaction. Thirdly, it is
assumed that there is no organic problem worth worrying about, nothing that
some CBT/GET can't fix. There is a significant body of biomedical evidence
to contradict this, showing numerous physical abnormalities in ME/CFS.
This
evidence is never acknowledged by the supporters of PACE.

As if this number of untested assumptions weren't enough it is then assumed
in the PACE trial that these changes are reversible. There is no evidence
in the report that any participant's condition was reversed.

Either the diagnosis of fear avoidance and deconditioning etc. is wrong, or
the treatment is inappropriate.
The authors only contemplate the latter
possibility. They stop short of contemplating the possibility that the
diagnosis is wrong at least for some sections of the sample and that their
model has failed for them at least. They say: 'The effectiveness of
behavioural treatments does not imply that the condition is psychological
in nature.' What is it then?

It is staring us in the face but remains unsaid by the investigators that
ME/CFS might indeed have a strong biological basis which prevents better
performance in the tests used here and that the 'physiological changes'
attributed to deconditioning/fear avoidance, etc. ought to be explored by
appropriate laboratory investigations.

Here is a suggestion: the worst-performing group in the 6 minute walking
test of the PACE study should be invited to participate in a biomedical
study investigating physiological factors which might be at work in their
poor performance. They could be compared with the best-performing group as
well as with healthy controls. Biomedical research into ME/CFS has already
discovered physiological processes relevant to physical and mental
performance. These findings are never mentioned by the authors.
This could
be an elegant follow-up project.

Yes, this would mean turning to the biomedical model for assistance, so far
not countenanced by the authors. It would also mean turning away from the
biopsychosocial model as it is currently applied, with the dominance of the
'psychosocial'. But, evidence has failed to support the paradigm favoured
by the authors. In accordance with good scientific principles it would be
appropriate to discard this paradigm and try another, the biomedical one,
which shows promise. Why cling stridently to the wreckage of a failed
paradigm? This shift could also be seen as a rebalancing of the
biopsychosocial paradigm by restoring the 'bio' to it. The psychosocial
needs of patients can still be cared for in accordance with the ideals of
the model.

Susanna Agardy
Australia

Thursday, December 13, 2012

SSD issue on Huffington Post and Psychology Today

From Suzy Chapman for http://dxrevisionwatch.com

December 12, 2012


Considered comments welcomed on both sites (both are moderated) but if reading or posting comment on Huff Po, please also click on the Psychology Today blog and leave a comment there, too, if you can, as Dr Frances wants to demonstrate, via numbers of PT post hits, the level of interest in this issue. We'd like to make it over 6000 hits by the end of today.



Huffington Post blogs


http://www.huffingtonpost.com/allen-frances/mislabeling-medical-illne_b_2265198.html

Allen Frances
Professor Emeritus, Duke University


"Mislabeling Medical Illness As Mental Disorder: The Eleventh DSM-5 Mistake"

Posted: 12/11/2012 6:00 pm


Also on Psychology Today at:

http://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-medical-illness-mental-disorder


--------------------


Response at:

http://www.madinamerica.com/

Featured Blogs

http://www.madinamerica.com/2012/12/the-dsm-5-anachronistic-before-its-time-boycott-the-dsm-5/

"Boycott The DSM-5: Anachronistic Before Its Time"

Jack Carney, DSW | December 10, 2012

When plans for the DSM-5 were first announced about ten years ago, most folks' reaction was "Why?". Many of us asked that same question several times as the publication date for the new tome kept on getting pushed back. Finally, the curtain enshrouding the DSM-5 Task Force and its several committees began to part and proposed revisions/additions began to appear on its website. To our dismay, we found our question answered.



Suzy Chapman
_____________________

me.agenda@virgin.net
http://dxrevisionwatch.com
http://twitter.com/dxrevisionwatch
http://meagenda.wordpress.com
http://www.facebook.com/MEagenda

Next letter from Countess of Mar to Wessely

Permission to repost

http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely-12th-Dec-2012.htm

http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely-12th-Dec-2012.pdf

From: MAR, Countess

Sent: 12 December 2012 10:36

To: 'Wessely, Simon'

Subject: My letter of 5 December 2012
http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely.htm

Dear Professor Wessely

I am sure you will appreciate the importance of my letter of 5 December
2012. Please will you answer the central question: do you still believe that
ME/CFS is "perpetuated predominantly by dysfunctional beliefs and coping
behaviours"?

The rancour that persists seems to result from the incompatible and,
seemingly, irreconcilable views about why patients with ME/CFS continue to
experience exercise intolerance, fatigue, pain and other incapacitating
symptoms for long periods following a viral infection or other environmental
exposure.

The psychological model, which you first proposed, argues that these
symptoms result predominantly from physical deconditioning secondary to fear of activity. Almost without exception, this model is not consistent with the experience of patients with a diagnosis of CFS/ME; nor is it consistent with the data from the FINE and PACE trials, as well as a significant bio-medical evidence base, which all suggest that the patients are correct.

It is my hope that we can find a way out of the current impasse; that we
clarify where we agree and disagree, and that we find the means to advance
the science of ME/CFS to the benefit of millions of patients worldwide who
are now living their lives in the shadows of despair.

I look forward to hearing from you soon.

Yours sincerely

Mar

-----------------------------
http://www.meactionuk.org.uk/
-----------------------------
* * *
 
That's certainly my experience.  When I relapsed this time, I went from being able to walk 2 miles to work to needing to take the bus to being so exhausted after walking 2 blocks from the bus stop that I had to rest for an hour before doing any work, all in a matter of weeks.
 
When I brought it up to a doctor -- regretfully not my own -- he confirmed that it is impossible for a healthy human to decondition that rapidly.
 
My own doctor avoided the deconditioning argument and instead went for "you're just depressed, you can do more than you think you can" while ignoring that I was still thinking like a healthy person and thought I could do a lot more than my body would allow me to do.
 
 

Monday, December 10, 2012

Free books

Erica Verrillo has left a new comment on your post "Mislabeling Medical Illness As Mental Disorder | P...":

You have a great blog! It may interest you to know that "hysterical paralysis," that mainstay of the Victorian era, is now called MS.

I'm giving the CFS/ME community a Christmas present. It's the second edition of CFS: A Treatment Guide. (The first edition was published by St. Martin's Press in 1998.) It has now been updated and I am giving it away. (It's perfectly legit. I own it, so I can give it away for free.)

If you can, please post this. I'd like as many people with CFS/ME as possible to have a healthier 2013.

On December 22nd and December 23rd 2012, Amazon.com will be giving away free copies of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition. Dr. Charles Lapp calls this "the book every patient should have." The book includes over 100 effective treatments, spanning the full range of pharmaceutical and complementary modalities, an in-depth discussion of symptoms with cross-referencing to appropriate treatments, the latest research into the causes and mechanisms of the illness, doctors' protocols, coping techniques, special sections for managing chemical sensitivities, dietary restrictions and the special needs of children, as well as extensive appendices covering resources, locations of doctors and clinics, local, national and international organizations, and internet ordering information. The book also features over 2600 useful links to further reading, research articles, and patient reviews. Don't miss out on this opportunity!

For more information go to: http://www.cfstreatmentguide.com.
Blog: http://cfstreatment.blogspot.com/

Finally, One Link Established: Chronic Fatigue Syndrome (CFS), Lupus


 
"

Does HPA Affect Fibromyalgia And Chronic Fatigue Syndrome?


Abnormal levels of certain chemicals regulated in the HPA axis area of the brain system, have been proposed as a cause of Chronic Fatigue Syndrome and also have some influence in Fibromyalgia. This system controls important functions, including sleep, stress response, and depression. Of particular interest to researchers, are the chemicals and other factors listed below that are controlled by the HPA axis.
The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, post-traumatic stress disorder, borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism. Antidepressants, which are routinely prescribed for many of these illnesses, serve to regulate HPA axis function. All of these conditions and their symptoms are commonly seen in Chronic Lyme disease patients that contain a host of infections and neurotoxins that block serotonin receptors in the brain.

The theory for Chronic Fatigue Syndrome having a viral cause is not based on hard evidence, rather, on an ever-growing series of observations that suggest this association:
Chronic Fatigue Syndrome as well as Fibromyalgia and Autoimmune disease patients are often found with elevated levels of antibodies to many organisms that cause fatigue and other Chronic Fatigue Syndrome symptoms. Such organisms include those that cause Lyme disease, Candida (“yeast infection”), herpes virus type 6 (HHV-6), human T cell lymph tropic virus (HTLV), Epstein-Barr, measles, coxsackie B, cytomegalovirus, or parvovirus.
Many of these infectious agents are very common; however, none have emerged as a definitive cause of CFS. Well-designed studies of patients who met strict criteria for CFS without any known cause have not found an increased incidence of any specific infection(s).
In up to 80% of cases, CFS starts suddenly with a flu-like condition. In the U.S., there have been reports of cluster outbreaks of CFS occurring within the same household, workplace, and community (but most have not been confirmed by the Centers for Disease Control and Prevention). However, most cases of CFS occur sporadically in individuals, and do not appear to be contagious. These all have the pattern of infections and more importantly, complexes of infections taking over the patient’s immune system, which is clearly seen in the depressed CD57 markers found in almost all of this population.

Sunday, December 9, 2012

Mislabeling Medical Illness As Mental Disorder | Psychology Today

 
A MUST READ: "Do we really want to burden and stigmatize seriously ill people with an additional diagnosis of mental illness, just because they are worried about being sick and are vigilant about their symptoms? Might patients with life threatening diseases become reluctant to report new symptoms that might be early indicators of recurrence, metastasis or secondary disease – for fear of attracting a diagnosis of 'SSD'?"

Saturday, December 8, 2012

A moving call for justice follows from Stonebird

A moving call for justice follows from the 'Stonebird - The lived
experience of Severe ME' website:

http://carersfight.blogspot.co.uk/2012/12/when-will-there-be-public-inquiry-into.html

WHEN WILL THERE BE A PUBLIC INQUIRY INTO ME?

By Linda Crowhurst, 7 December 2012.

When is the neglect, abuse denial negation and downplaying of ME by
wrongful psychiatric involvement and interpretation going to stop?

How many more people have to die?

How many more people who are tormented and physically suffering , in
agony for years, to decades, will have to endure the misdiagnosis,
misinterpretation by doctors and others and the misrepresentation in the
NHS and the media ?

When will sense, honesty, integrity, genuine concern ,compassion and
scientific research with proper, specific ME criteria, win through?

It is devastating to have an incurable disease, but to have one that is
disregarded and negated, knowing you are left on the edge of survival
and society because a group of powerful people representing vested
interests chose to spread confusion and untruth about this serious
physical disease , chose to complicate the illness and bury it in a sea
of generalised fatigue conditions is not only shocking and unfathomable
to the sufferer, it is way beyond unacceptable.

Why is this continuing? Who has the integrity to speak the truth and
stop sitting on the fence? Who has the integrity to challenge the lies
about ME?

Who is willing to acknowledge the abuse for the past 2 decades that we
with a genuine neurological disease have had to put up with?

Very few it seems.

I want to get well. I want to get better. I want to know what is the
physical cause at the centre of my disease. I want proper medical
investigation. I want the tests that everyone else is entitled to on the
NHS, except if you have the label ME. I want this senseless negation and
waste of lives to stop.

The day I was labelled with ME, respect and medical equality went out
the window. The hope of finding our what has gone wrong in my body
disappeared from view that day and has never returned.

Twenty years on there are very few practitioners able to diagnose,
willing to seek, able to understand. Most are compromised or don't
believe in it or don't believe its as bad as it is or believe its all or
mostly in the mind or sign up to the misrepresentation and focus on
generalised fatigue, ignoring the most serious neurological symptoms
altogether.

How wicked and wrong and misplaced is that? How cruel ? The most
severest, the most damaged and tormented are left vulnerable frail and
unsafe in a system that is failing them on every level. The medical
system is unable to offer what is needed.

That is a frightening place to be when you don't even know if someone
will understand your physical dysfunction or accept it or take it in to
account when they recommend treatment, anaesthesia, advise.

When you don't know if they even believe you are severely physically
ill, when their intervention can harm you, worsen your symptoms, harm
your body, leave you devastated and traumatised for months and years
afterwards.

When you have to trust people to represent you, when they have no real
clue about your physical nightmare reality.

When even if someone says they understand ME, yet still they are
misinterpreting it.

When the focus is on fatigue and all the complex multi system
dysfunction is ignored or pigeon holed into a pet theory to suit them
rather than look at the reality and impact,when risk assessment is not
done because the illness is not understood or acknowledged properly.

When are we going to be treated with equality ?

When are we going to get consultants who know about the neurological
disease ME and who can actually make recommendations that help not
damage us?

When will research actually be done on the correct group of people who
fit in to the ICC criteria for ME ?

Watered down research populations mean watered down results, waste of
money, lack of helpful findings, further confusion over who the research
is actually for.

When will we feel safe to have treatment because it will be appropriate,
relevant, address the disease process,be suitable and effective, not
risk our lives and our health, not based on guess work, based on no
proper medical testing; fanciful risk taking ?

I don't want to be a guinea pig for people's pet theories anymore. I
want a proper medical service and respect for my disease. I want medical
support and people who know what they are doing , in my life. I don't
want to be frightened by the severity of my illness, left to get on with
it and try and figure it out because the alternative of involving people
is to risk abuse and further harm.

I simply do not want to hear that any more people have died or killed
themselves, because of the stark, physical ,tortuous reality of having ME.

What more does it take to get heard and honoured?

When will there be a public inquiry?

Where is the public outcry?

Stunningly silent. Pitifully small.

Linda Crowhurst Dec 7 2012

http://carersfight.blogspot.co.uk/2012/12/when-will-there-be-public-inquiry-into.html

PLEASE write to UK Parliamentarians to call for such an urgently-needed
inquiry into all matters pertaining to UK ME and CFS policy. A polite
letter to the House of Commons Health Select Committee Chairman and your
own MP will suffice but better still to write to ALL members of the
committee if you can: and keep writing until they can ignore us no more.
For further information and helpful materials for writing to Parliament
do follow the links at the top of the webpage at:
http://www.angliameaction.org.uk/

Thank you for your time.

Anglia ME Action, 8 December 2012.
contact@angliameaction.org.uk

Insufficient Data / by Occupy CFS

Insufficient Data
Jennie Spotila/ Occupy CFS
December 4th, 2012

One of the most frustrating aspects of coping with CFS is the lack of
definitive data. A PubMed search for "chronic fatigue syndrome" yields
4,877 results (as of today), but as a patient on the front lines I have to
make treatment decisions based on theory, supposition, and anecdotal
evidence.

Case in point: I'm wearing a heart rate monitor and reducing my activity to
stay below my anaerobic threshold based on a few studies that show CFS
patients have disruptions in their energy metabolism. There is even a
published case study showing that following this pacing method and short
duration exercise leads to improvement in functional capacity and activity
recovery.

But because my anaerobic threshold is so low, I exceed my heart rate limit
just by climbing 12 steps. An expert advised me to reduce my activity to
stay below the heart rate limit, even if it meant stopping halfway up the
steps to rest or using a shower chair. Another expert endorsed the use of
beta blockers to lower my heart rate. That topic is worthy of a separate
post, but there are patients who have benefited from this approach. Sue
Jackson has written excellent posts about her experience doing just that,
and she credits beta blockers with drastically improving her functional
capacity. When I asked the first expert about beta blockers, the expert
responded that beta blockers would not change my actual anaerobic threshold
but would mask when I was exceeding my limit by lowering my heart rate.
So how do I decide what to do?

The full post can be found here:
http://www.occupycfs.com/2012/12/04/insufficient-data/