Saturday, June 20, 2009

New ADA Case re CFS accommodations

[Don't get put off by the title! Tom]

http://tinyurl.com/ljjfjt
i.e.
http://www.businessmanagementdaily.com/articles/19324/1/Chronic-Fatigue-Syndrome-or-Just-Too-Pooped-to-Work/Page1.html#

Chronic Fatigue Syndrome or Just Too Pooped to Work?

By Mindy Chapman, Esq., Mindy Chapman & Associates ADA , Case In Point

6/18/2009 - 2:21pm



If you have an employee who seems constantly exhausted, take note: He or she
may suffer from chronic fatigue syndrome (CFS). And under the newly revised
Americans with Disabilities Act (ADA), that person could be deemed
"disabled" and entitled to reasonable work accommodations.

Case in Point: Lorin Netterville was diagnosed with CFS in the late 1980s,
but she had lived symptom-free for many years. That ended soon after she
began work as an administrative aide for Chevron. She suffered a relapse of
her CFS, whose symptoms include joint pain, inability to concentrate and
excessive fatigue after ordinary tasks.

Netterville asked for two accommodations. First, she asked for leave, which
was granted. Second, she asked for permission to take more frequent breaks
and to alternate job tasks. Chevron never responded to the second request.
Eventually, Netterville was terminated for allegedly misrepresenting her
medical history on a pre-hire questionnaire because she failed to state that
she'd been diagnosed with CFS.

Netterville sued Chevron for violating her ADA rights. The key question was
whether or not Netterville was suffering an ADA-qualifying disability at the
time of her firing. Employees are covered under the ADA if they have a
physical or mental impairment that "substantially limits" one or more major
life activities. The new ADA Amendments Act, which took effect on Jan. 1,
broadened the meaning of "substantially limits" and, thus, more Americans
are now eligible for ADA accommodations at their jobs.

The lower court dismissed her claim, agreeing with Chevron that Netterville
was not protected under the ADA because she was in remission at the time.
She then brought her case to 5th Circuit appeals court. The ruling could be
a harbinger for ADA cases going forward. (EEOC v. Chevron Phillips Chem.
Co., 5th Cir., 6/5/09)

What happened next and what lessons can be learned?

The court reversed the lower court ruling and sided with Netterville. It
said that although "temporary, non-chronic impairments," such as broken
arms, are not ADA-covered disabilities, "the consensus of the medical
community is that CFS is a chronic disease of indefinite duration for which
there is no known cure."

The court added, "As the Supreme Court has noted in the context of
evaluating whether a limitation is substantial, an impairment does not have
to be completely disabling to qualify under the ADA. Moreover, the
assessment of whether an individual is disabled is made not just with
respect to the workplace, but also by looking at the effect of the
impairment on the individual's entire life.

3 lessons learned . without going to court

1. Don't be quick to fire.  Courts have a "retaliation stop watch." They'll
scrutinize how much time has lapsed between when an employee asks for a
reasonable accommodation and when an adverse employment action occurs.

2. Engage in the interactive process. The court noted that the employer here
blew off the employee and did not respond to the second request. Always
communicate with an employee who makes a request for an accommodation, then
document the discussion.

3. Understand the new ADA changes. The new ADA Amendments Act says that
employees with medical conditions in remission may be covered under the ADA.
Don't be a test case for new laws and regulations. Proactive legal advice is
always cheaper than reactively defending a lawsuit as in this case. For more
on the new law, see our collection of articles on the new law, plus the text
of the law itself.

~~~~~~~
  Mindy Chapman, Esq., Mindy Chapman & Associates

Mindy is a nationally recognized authority in EEO laws and is a contributing
editor to the HR Specialist: Employment Law monthly newsletter. She is
highly regarded for her workplace compliance training that "clicks and
sticks," because it is practical and memorable. She is also the coauthor of
the American Bar Association's bestseller and authority on civil rights
training, "Case Dismissed! Taking Your Harassment Prevention Training to
Trial."

The Society for Human Resources Management (SHRM) has recognized Mindy as
one of its Top Ten Speakers nationally. She has trained extensively in all
industries at all levels of the workforce-from boardroom executives to
managers and supervisors and to hourly employees in union and non-union
environments.

View all articles by Mindy Chapman, Esq., Mindy Chapman & Associates


Dr. Enlander to represent Ireland in European Think Tank

Belfast-born doctor pushes ME research
Dara Gantly- dara.gantly@imt.ie
Dara Gantly talks to Dr Derek Enlander — a Belfast-born doctor who specialises in the diagnosis and treatment of myalgic encepalomyelitis (ME)— also known as chronic fatigue syndrome — in his New York practice.
It was two decades ago, on a return visit to his native Belfast, that Dr Derek Enlander formed what was to become a lasting interest in myalgicencephalomyelitis (ME). Now often diagnosed under the name Chronic Fatigue Syndrome (CFS), ME is a potentially disabling and chronic illness, affecting the brain, muscles and immune system that can cause profound exhaustion, pain and mental confusion.
Having graduated from the RCSI in 1963 and trained at the Meath Hospital, Dr Enlander left for Stanford University in California in 1966 under afellowship scheme, initially for just one year, researching the Epstein-Barr virus. He has lived and worked in the US ever since.
Childhood friend
During one of his return visits to Northern Ireland, Dr Enlander was asked by a childhood friend to help him in the then little-known condition, ME [Dr Melvin Ramsay at the Royal Free Hospital in London had written the seminal text on the condition in the mid-1950s], which had caused his friend to curtail his successful estate agency business. “My school friend in Belfast said to me that when I went back to America, I had to find out about this disease so that I could help him. That formed my interest. This was 18 to 19 years ago,” recalled Dr Enlander.
His practice in New York is now devoted to ME/CFS and fibromyalgia, and he is a recognised expert in the field across the globe.
Dr Enlander has not quite lost his Belfast accent, and continues his professional relationship with Ireland in a number of ways. In fact, he has been chosen as the Irish representative on a new European Think Tank for ME,which held its first meeting last weekend (June 13) in Norway.
Set up by a new organisation called the European Society for ME, the ThinkTank wants to promote cooperation among scientists to stimulate new research.The 10-member group wants to initiate an effective research effort to find the secret behind the somewhat mysterious disease. Doctors and scientists are still confused over what causes ME, which is estimated to affect around 12,000 people in Ireland. While the exact cause remains unknown, most patients experience a flu-like illness before onset.
Uncertainty
This uncertainty has only added to the controversy surround ME, as patients often look well and have normal bloods returned when tested. “The doctor is [often] skeptical and believes the patient must be imagining that they are sick. The idea that they can’t work is because they are lazy or they are neurotic, and they are given this label of a psychiatric neurosis,” explained Dr Enlander.“But this is not a psychiatric disease. This is a physical disease,” he stressed. “It has been shown that there is a dysfunction of the immune system, and it is this dysfunction that people are now actually focusing on for treatment.”
Dr Enlander is highly critical of psychiatrists who believe graded exercise therapy and cognitive therapy can be effective treatment. “We have found that graded exercise therapy can actually be detrimental to the patient’s progress; it can actually produce relapse. Yet this is proclaimed by several psychiatric experts to be the only mode of treatment,” he told *IMT*.“This is very, very damaging. The idea of labelling these patients as ‘psychiatric’ is very problematic, because it produces greater stress, and stress produces relapse.”
ME has been around for centuries, and it is thought both Florence Nightingale and Charles Darwin suffered from it, after they returned from the Crimea and Galápagos respectively.
Neurasthenia
It has had many names, including neurasthenia (1800s), post-viral fatigue syndrome (PVFS), and Royal Free Disease — a major outbreak occurred in London’s Royal Free Hospital in 1955. ME used to occur in mini-epidemics,but since 1956 it is more usually seen in isolated cases.
A newer name is Chronic Fatigue Syndrome. However, it only describes fatigue and CFS can be confused with chronic tiredness, ‘burn-out’ and depression.
While Dr Enlander prefers the term ME, he believes there is really no ideal term for the disease.“You can poke holes into any term. Chronic Fatigue Syndrome unfortunately was coined in America and the term creates great skepticism. Doctors don’t understand the disease. Then it was given the pseudonym of ‘yuppie disease’ in the popular press, which added to the problem.”
No cure for ME
Dr Enlander was due to give a talk, organised by the Irish ME/CFS Association, on the ‘Current treatment of ME/CFS’ at the Mount Herbert Hotel, Herbert Road, Dublin this Thursday, June 18. At present there is no cure for ME, and no specific diagnostic test. Diagnosis is made from recognising the main symptoms and ruling out of other illnesses. However, most patients have had positive exposure to one of a number of viruses, such as Human Herpes virus 6 (HHV-6), which can produce ill effect in the immune system. “We are particularly interested in the immune system dysfunction. That is what we are treating, to some good effect. But there is no 100 per cent effective method of treatment,” said Dr Enlander, ahead of the Dublin talk.
His clinic in Manhattan has devised a protocol based on what is called the ‘Methylation Cycle’, which Dr Enlander believes is defective in this disease. “The protocol that we use actually is IMMUNOPROP and IMMUNOPlus capsules and Hepapressin (generic Kutapressin) injection – immune system modulators. “We are also looking at hyperbaric oxygen treatment, but this is at a very early stage,” he added, explaining that the thinking behind this was that if you increase the oxygenation the patient will feel better.
A diagnostic test
His latest work involves a diagnostic test using hydrogen sulphide.“Hydrogen sulphide is not the specific test for this disease, but it is an indicator of an abnormality.”
Author of The CFS Handbook, Dr Enlander has recently been appointed editor of a new medical journal, Fatigue, which plans to start publishing early next year. This, along with the formation of the new European Think Tank, should help promote a greater understanding of the disease.
Last year’s winner of the Nobel Prize in Medicine, Prof Luc Montagnier of France, one of the discoverers of the HIV-virus, is a supporter of the Think Tank, but was unable to join the first meeting in Norway. “Scientists have already uncovered a lot about ME, but this information doesnot reach professional healthcare personnel, and the disease is still not taken seriously,” he commented. “It is about time this changed.”
Posted in Guests http://www.imt.ie/opinion/guests/ on *19 June 2009*
* * *
PERMISSION TO FORWARD, RE-POST AND USE IN NEWSLETTERS
News item alert link

Click http://tinyurl.com/mnrupr

which has been created from the original url

http://www.imt.ie/opinion/2009/06/belfastborn_doctor_pushes_me_r.html

Title: Belfast-born doctor pushes ME research (Irish Medical Times, 19 June
2009)

Contains: Belfast-born Dr Derek Enlander has been chosen as the Irish
representative on a new European Think Tank for ME ... The 10-member group
wants to initiate an effective research effort to find the secret behind the
somewhat mysterious disease. "The doctor is [often] skeptical and believes the patient must be imagining that they are sick. The idea that they can't work is because they are lazy or they are neurotic ... "But this is not a psychiatric disease. This is a physical disease," he stressed. "It has been shown that there is a dysfunction of the immune system, and it is this dysfunction that people are now actually focusing on for treatment." ... Dr
Enlander is highly critical of psychiatrists who believe graded exercise
therapy and cognitive therapy can be effective treatment. "We have found
that graded exercise therapy can actually be detrimental to the patient's
progress ... most patients have had positive exposure to one of a number of
viruses, such as Human Herpes virus 6 ... His clinic in Manhattan has
devised a protocol based on what is called the 'Methylation Cycle' ...
latest work involves a diagnostic test using hydrogen sulphide. "Hydrogen
sulphide is not the specific test for this disease, but it is an indicator
of an abnormality." ... "Scientists have already uncovered a lot about ME, but this information does not reach professional health care personnel, and the disease is still not taken seriously," he commented. "It is about time this changed."

Any letters in response should be sent to e-mail address
eveningnewsletters@archant.co.uk

Start letter with "Dear Editor,"

Note: To click the links to any letters in response and, from there, any
subsequent responses, as well as to the original article, it is necessary to
be registered with ME Free For All.org (Details for new subscribers below)

To read a letter from Dr John Greensmith
click here http://www.mefreeforall.org/June-2009.1347.0.html#c7296


Please do send a letter in reply if you can manage it to the e-mail address
given above as the more of us who submit one, the greater chance of at least
one getting published.

Or just laugh your head off with our joke of the day
here http://www.mefreeforall.org/Joke-of-the-Day.378.0.html


Cheers
John

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

How to Register

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Constructive suggestions are always welcome.

Cheers
John
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org







Friday, June 19, 2009

Statement from ESME




STATEMENT FROM ESME – EUROPEAN SOCIETY FOR ME

More Biomedical Research Needed



ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a physical disease. It is not a product of the patients' imagination and is not a psychological problem. Funds have been used for research into the hypothetical psychiatric nature of the disease at the expense of biomedical research. Future research needs to be interdisciplinary and focused on the causes, early diagnosis and treatment of ME/CFS.



The British National Health Service has published NICE guidelines for this
disorder which, according to ESME, are not helpful and might even induce
relapse in some cases.



ESME will encourage research leading to the accumulation of new knowledge
and to a better understanding of the disease, and will endeavour to raise
funding for biomedical research in, and education about, ME/CFS.



Stavanger, Norway, June 13, 2009

Launch Meeting ESME



PD Dr. Liv Bode

Prof. Dr. Med. Kenny De Meirleir

Dr. Med. Derek Enlander

Dr. Med. Ana Garcia Quintana      

Prof. Dr. Hanns Ludwig

Prof. Dr. Med. Mária J. Molnár

Prof. Dr. Bodil Norrild    

Prof. Dr. Med. Ola Didrik Saugstad

Prof. Dr. Med. Babill Stray-Pedersen

Prof. Dr. Med. Umberto Tirelli








Thursday, June 18, 2009

CFS Timeline in Hillary Johnson's Blog

I've posted a new blog entry at www.oslersweb.com/blog.htm.

It's called "Numerology" and is a selective time-line of events in
ME/CFS history since the Lake Tahoe outbreak.


All the best,

Hillary Johnson
 






 

Tell Policymakers about your Disability!

Here's an opportunity to comment on the disabling nature of our illness and hopefully get the news out to policymakers who can make a difference.  Note the information in the third paragraph, which specifically provides for written as well as phoned-in comments.  For those in the Minneapolis area, there is also a reception on July 21 perfect for informal networking.
 
--Liz Willow
 
-----------------------------------------------------
 
NEWS ADVISORY
NCD #09–583
June 18, 2009
Contact: Mark S. Quigley
202-272-2008
 
National Council on Disability to Hold Minneapolis Meeting to Hear Issues Affecting People with Disabilities
WASHINGTON—The National Council on Disability (NCD) will conduct its next quarterly meeting at the Minneapolis Marriott City Center, 30 South 7th Street, Minneapolis, MN, beginning at 8:30 a.m. on Monday, July 20, 2009, and ending at 11:00 a.m. on Wednesday, July 22, 2009. All times are Central Daylight Time. This meeting is open to the public.
 
NCD believes it is vital to hear from communities around the country on what works and what does not for people with disabilities. This meeting will provide another opportunity for that exchange. The agenda will include, among other things, sessions on emergency preparedness, housing, workforce infrastructure, access to outdoor recreation, international development, the Developmental Disabilities and Bill of Rights Act, strategic planning, and NCD's 2010 National Summit on Disability Policy.
 
Specific times are also designated to receive public comment, supported by a toll-free call-in line, and input is encouraged and greatly appreciated. Individuals or organizations can also provide written comments by e-mail, fax, or mail. Public comment sessions will be held Monday, July 20, 11:30 a.m. until noon and on Tuesday, July 21, 4:30 p.m. until 5:00 p.m. The toll-free call-in number is (888) 790-6568, and the pass code is "NCD Meeting."
 
NCD will host a reception at the hotel from 5:00 p.m. to 6:30 p.m. immediately following the public comment session. Meeting participants, audience members, and disability community stakeholders are invited to attend.
 
The purpose of NCD, an independent federal agency, is to promote programs, practices, policies and procedures that ensure full inclusion of people with disabilities into all aspects of society. NCD accomplishes this mission by providing advice and making recommendations to the President, Congress, governmental agencies, and other stakeholders.
 
For more information, please contact NCD's Director of External Affairs, Mark S. Quigley, at mquigley@ncd.gov  or by telephone at 202-272-2008.
 
# # #
 
 
 
Mark S. Quigley
Director of External Affairs
National Council on Disability
1331 F Street, NW Suite 850
Washington, DC 20004
202-272-2008
202-272-2022 fax
www.ncd.gov
 
You also may want to join more than 2,000 subscribers who receive the latest news from NCD via its listserv. Please sign up at http://listserv.access.gpo.gov/  and click on On-line mailing list archives, then select NCD-NEWS-L and complete the short subscription form.





 

Wednesday, June 17, 2009

Proof it's Not All in the Mind

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Tekegraph.co.com  



ME: Proof that it isn't all in the mind?


Belgian doctors, Professor Kenny De Meirleir and Dr
Chris Roelant, have developed a simple test that,
they claim, solves the mystery of 'yuppie flu'.


By Liz Hunt



Anna's deterioration was rapid and unrelenting. One
moment the pretty, young Scandinavian woman was
at the peak of youthful vitality, newly married and
excited about the future. The next, that future was
much diminished, her life limited to the environs of
her bedroom, and dictated to by the illness that had
overwhelmed her.

It had started with persistent fatigue, muscle pain,
and a growing sensitivity to light after a honeymoon
trip to Mexico in the summer of 2006. By December,
she was in a wheelchair. Three months later she
was bedridden, her face pale, her features shrunken,
barely able to move or talk, and being fed through a
naso-gastric tube.


Anna – not her real name as her identity is being
protected at the request of her family – was the
subject of a short film shown at a conference in
London last week. Her case, according to Professor
Kenny De Meirleir of the Vrije Universiteit Brussel,
Belgium, illustrates the worst ravages of myalgic
encephalomyelitis/encephalopathy or ME, also known
as chronic fatigue syndrome or post viral fatigue
syndrome.

Once it was derided as "yuppie flu" because,
following its emergence in the early Eighties, its
"typical" victim was, supposedly, a high-achieving
young professional. ME was also assumed by many
doctors, and much of the public, to be
psychosomatic in origin – if it existed at all.

In more enlightened times, ME is now accepted by
the World Health Organisation, and Britain's medical
royal colleges, as a complex, chronic disease of
varying severity characterised by a complex set of
symptoms. (In addition to extreme fatigue, and
general malaise, there are musco-skeletal
symptoms, especially muscle pain, brain and central
nervous symptoms, evidence of immune system
dysfunction, mood swings, depression etc.)
According to the ME Association, there are 250,000
sufferers in Britain.


The debate about the cause of ME continues to
flourish at conferences, in journals and on websites:
are the symptoms a physical manifestation of a
problem in the brain such as a chemical imbalance;
is sustained stress or exertion to blame; or is ME the
result of abnormal physiological functioning, with an
organic cause, such as a viral or bacterial infection,
or exposure to a toxic agent?

The answer is crucial because it determines the
direction of research funding which has, according to
Prof De Meirleir, for too long been skewed in favour
of a psychiatric approach. He hopes to change that.

After more than 20 years of investigation, and having
assessed and treated thousands of patients in
Europe and America, Prof De Meirleir, who is an
internist at the Himmunitas Foundation in Brussels
(a non-profit organisation specialising in chronic
immune disorders), believes he has identified a
mechanism to explain the development of ME that
opens up new treatment options.


In addition, he and his fellow Belgian, Dr Chris
Roelant, Chief Operating Officer of the diagnostics
company Protea biopharma, have developed a
self-diagnosing urine test for ME.

If they are correct – and that must be determined by
scrutiny of their research and use of the test by
other scientists and doctors – then it marks an
encouraging breakthrough.

The symptoms of ME are wide-ranging and occur in a
number of other conditions, so a diagnosis of ME is
currently reached only after eliminating other
causes.

"This test will tell patients that it is not a problem
between their ears, but a real physiological
problem," insists Dr Roelant.

Prof De Meirleir and Dr Roelant have, somewhat
controversially, opted to go public with their findings
before publication in a peer-reviewed journal. They
say this is because of the implications of their
research, especially for severely debilitated ME
patients.

At the Invest in ME conference in London last Friday
they also raised the possibility of "transmissability"
of the illness in this group of patients – another
controversial claim.


Prof De Meirleir has never believed that ME is an
"illness of the mind". Exercise physiology was his
initial area of expertise and it was in this capacity
that he was asked by a psychiatrist to assess some
of his patients who were suffering from a mystery
illness characterised by extreme fatigue.
"One of them was a banker who started work at 9am
and had to finish at 11am because he was so
exhausted," says Prof De Meirleir. "He did not appear
to be suffering from any psychiatric disorder."


The case ignited the young doctor's interest. During
a six-month sabbatical at the University of
Pennsylvania in 1990, he heard about the "Lake
Tahoe epidemic".

In 1984, hundreds of people living in a small town
on Lake Tahoe in California succumbed to a flu-like
illness. The symptoms, including fatigue,
neurological and immunological symptoms, persisted
in just under 10 per cent of the population (about
300). This was followed by numerous reports of
outbreaks of a similar illness around the world, and
persuaded Prof De Meirleir of the likelihood of a
causative agent being involved in ME, a fact that has
heavily influenced his research interests.

Since the early 1990s, he has built up a large clinical
practice in Brussels where he sees around 2,000 new
patients a year. Antibiotics are a cornerstone of his
therapeutic approach, as dictated by his research.


In recent years, and in collaboration with a
microbiologist, Dr Henry Butt, and his team at the
University of Melbourne, Prof De Meirleir has focused
on bacteria in the gastro-intestinal tract.

"This is an obvious place to start since 80 per cent
of immune system cells are located here,"
he says.
A healthy, functioning gut is colonised by "good"
bacteria that aid digestion and contribute to our
wellbeing.

Many ME patients suffer from multiple intestinal
symptoms, and Prof De Meirleir believes that an
overgrowth of "bad" bacteria, including enterococci,
streptococci and prevotella, is to blame.

These bacteria are normally present in very small
quantities in a healthy gut, but can initiate a
sequence of events leading to the multifarious
symptoms of ME if they proliferate. (This research
will be published in the journal In Vivo, in July).


These "bad" bacteria produce hydrogen sulphide
(H2S)– a gas naturally occurring in the body, where
it has several functions – in minute quantities.

However, in larger quantities, it is a poisonous gas
that suppresses the immune system, and damages
the nervous system, according to Prof De Meirleir.

(Hydrogen sulphide is produced by some animals in preparation for hibernation because it "shuts down" the body which, in effect, is what occurs in ME.)

In addition, Prof De Meirleir described how he
believes the gas reacts with metals, including
mercury, introduced in minute amounts as
contaminants in food. The form of mercury produced
after reacting with hydrogen sulphide also disrupts
the normal production of energy (known as the Krebs
Cycle) by individual cells, and this, he says, would
explain the energy shortfall experienced by ME
patients.


Normal cellular functioning is inhibited and, over
time, this generates damaging free radicals, highly
reactive molecules that distort the structure of key
proteins, such as enzymes and hormones, necessary
for chemical reactions.

This results in what Prof De Meirleir calls "aberrant"
proteins (or prions), which lead to further symptoms
as the body is increasingly compromised, and which
he says may play a role in the transmissibility of ME.


The urine test, developed by Prof De Meirleir and Dr
Roelant in their privately funded research, detects
the presence of hydrogen sulphite metabolites,
which they say confirm the presence of abnormal
quantities of hydrogen sulphide-producing bacteria.
The intensity of the colour change in the urine
indicates the severity of the disease progression.


Not every ME patient progresses to its most severe
form, says Prof De Meirleir, but the varying
symptoms can all be explained by this proposed
mechanism for the disease.

In the worst cases of ME, he says it can be shown
that there is an almost complete eradication of
"good" bacteria (such as E. coli), the presence of a
high number of "bad" bacteria in stools, metal
deposits in tissues, and the presence of aberrant
proteins in saliva.

"What we have shown is that these patients have an organic disease involving one of the most toxic substances [H2S] that exist," he says.


So what causes the proliferation of
harmful bacteria in the first place?

There are, he says, many potential triggers ranging
from food- borne bacterial (eg salmonella)
infections, viruses, and toxins, or mental stress. He
says many ME sufferers have a history of gut
disorders including gluten and lactose intolerance,
which may predispose them to colonisation by
enterococci and streptococci.


Anna, the 28-year-old Scandinavian patient, is
typical in this respect, he claims; she had gut
problems in the past, including possible food
poisoning while in Mexico. Her treatment focuses on
short courses of antibiotics to decrease the numbers
of bad bacteria, treatment with probiotic
supplements to help restore the good bacteria, plus
vitamin and mineral supplements. "She is improving,"
says Prof De Meirleir.


ME support groups and the medical profession are
now considering Prof De Meirleir's work. However, Sir
Peter Spencer, chief executive of Action for ME,
welcomed the findings: "It is always heartening to
see new developments that might bring hope to the
250,000 people in the UK affected by this horrible
illness, he said.

"We look forward to seeing Professor Meirleir's
findings published in a peer-reviewed journal so that
we can develop a better understanding of this
research."


Prof De Meirleir says that helping patients like Anna,
of whom he has known many, is what has brought
him to this point.

"This has preoccupied me for more than 20 years.
I told [the psychiatrists] we would find a cause,
and I believe we have."

There are many ME patients and their families who
must hope that he is right.





* For more information on the ME urine test see
   www.proteabiopharma.com
 






 

The truth about Ampligen

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The Plot Thickens for HEMISPHERx Biopharma


Written by M.E.Garza

Friday, 29 May 2009 02:01AM




What do we think CFS is?"

Dr. William Reeves asked a worldwide audience
watching his streaming video presentation from the
meeting for the Chronic Fatigue Syndrome Advisory
Committee (CFSAC) of the Department of Health and
Human Services in Washington, DC. on Thursday.

"It's a complex illness, with alterations in complex
homeostatic systems. It's not the result of a single
mutation or a single environmental factor. It
comes from a combination of many factors:
genetics, gender, stressors, immune stressors all
interact."



Reeves is chief of the U.S. Centers for Disease
Control and Prevention's Chronic Viral Diseases
Branch, the man in charge of the government's top
Chronic Fatigue Research program.


A few years ago, during a press conference
which was set-up in an attempt to sway
public opinion and policy, Reeves revealed
that CDC researchers had uncovered
groundbreaking, scientific results which
established that CFS had a "biological
basis".



It was during that day, in late April of 2006, that
major television networks and hundreds of
newspapers carried the message that many had
been waiting to hear.

In the eyes of advocates and patients, that day
was to forever change the way chronic fatigue
syndrome would be conceptualized - by scientists,
physicians, and the public. At least, that's what
was supposed to happen.



Since that time, Reeves has not minced words
about his science or position on the matter. "CFS is
quite common," Reeves told Forbes Magazine
earlier this year. "It is a real illness. If you have
the symptoms of CFS, see a provider. It's not all in
your head -- it's not a crock."



Yesterday, Reeves was the ring master of what
turned out to be an Ampligen love-in" at the Health
and Human Services event. Not an insignificant fact
when you consider that this was the CFSAC's first
meeting under the Obama Administration's and that
the HHS is at the top of the food chain and rules the
FDA, the CDC, The Social Security Administration,
National Institute of Health, HRSA, Etc.

As some of you may already know, Ampligen, is an
experimental immunomodulatory double stranded
RNA drug developed by HEMISPHERx Biopharma
(Amex: HEB). In addition, it is the only drug in any
pipeline of any pharmaceutical company in the world
which aims to become the standard treatment for
CFS.


Reeves showed slide after slide with a diagrams and
lists. Almost always near the top of those slides
were references to HEB and Ampligen.

"This is our current model. You see the brain in
the middle. Around the brain, stress is involved,
traumatic childhood stressors, allostatic load
maladaptation to stressors, genes interact with
one's reaction to stress..."


Just then as countless CFS patients and
HEMISPHERx Biopharma investors were
watching, something went "Boom!"


It was yet another grenade lobbed at the publicly
traded company whose stock price had continued
inching upwards for yet another day in anticipation of
the Food and Drug Administration's pending decision
to approve the drug for widespread use in America.

This time, the pin was pulled by Adam Feuerstein, a
graduate from Emory University with a bachelor's
degree in political science who serves as the
Portfolio Manager, Biotech Select for TheStreet.com.
Adam asserted his own opinion- which apparently
many mistook for scientific fact. "Ampligen will not
be approved."


KABOOM! The moment TheStreet.com's Hemispherx's
CFS Drug Is a Long Shot article hit the wires, the
stock's share price started to take a nose dive.


The thinly disguised opinion piece from a writer
without a science or medical degree hit it's mark with
thousands of high-strung investors who began to
dump shares en-masse.

Many thought Feuerstein might just be right, so they
began to sell as quickly as possible. Others thought
the FDA had actually rendered a negative ruling
against the company because the stock was
suddenly dropping in value without any other
apparent explanation. Panic had hit the world of
Hemispherx share holders once again.



Did Feuerstein blister the company on purpose? Was
it all part of a sinister plan orchestrated to sink
prices lower so someone could swoop in and salvage
their piece for a lower price? Whether it was planned
that way or not, at least one big investor did just
that to the tune of over 230,000 shares not long
after HEB parcels had bottomed at $1.51- down from
a day high of $1.76.


Still, it would be expensive, time consuming and
difficult to prove a conspiracy like that beyond
reasonable doubt and we are not here to crucify Mr.
Feuerstein for exercising his constitutionally
protected rights.


Certainly, he's a bright man who is entitled to his
own opinion-- even his conclusions didn't come
wrapped up as nicely as they could have to some
investors who have since taken to slamming him
repeatedly on social media sites and forums across
the web.


Like it or not, this subject has become the talk of
the biomedical financial sector as many feel his
article was not substantiated by enough positive
knowledge or proof. Others argue that his research
was actually filled with misconceptions, and
misplaced scientific information. They're not alone.

Adam Feuerstein wouldn't know good science if it
bit him in the ass!"


In a world where CEOs of publicly traded companies
make it a point not to get into shouting matches
with misled members of the media, I was actually
given explicit permission, told I could "record and
report everything I'm going to say."


"I'm not going to say too much in direct response,
actually. The record can be set straight on this
matter by the government themselves. The same
people who have already told us this is a serious
gene malfunction that costs us north of $90 billion
a year in lost wages and productivity not to
mention social security benefits."


Yes, Dr. William A. Carter, CEO and Chairman of the
Board of HEMISPHERx Biopharma was making it
abundantly clear to me that an exposed nerve had
just been pricked – again. This is the same man who
has been accused of everything from not caring
about his own company's investors to selling snake
oil. He's also the brilliant mind who has never given
up on Ampligen and who genuinely seems driven to
help those who have to live with CFS and the
stigmas associated with it.

It sounds like those guys are living twenty years
behind in time," continued Dr. Carter, as he referred
to Feuerstein's assertion that CFS, a poorly
understood disease with no known cause..."

Had Feuerstein really not gotten the memo about the
scientific community's findings in 2006 or did he
simply choose to ignore them?



This is a disease that destroys lives," said
an impassioned Dr. Carter. "It costs people
their jobs, their marriages- as their
frustrated spouses walk out on them. In
some cases it even costs them their very
lives due to suicide and catastrophic heart
failure. Our drug helps so many of these
very sick, suffering people. There is ample
peer reviewed data and proof of that, yet
they choose to ignore it.


Perhaps the writers at TheStreet.com are unaware
that for several years now, the FDA has given people
suffering with CFS the right to use Ampligen for
emergency (compassionate) use.


Indeed, the company is authorized by the FDA and
has a "promising'' designation by the Agency on
Health Research Quality (AHRQ) emergency
treatment, which means HEMISPHERx can charge
patients up to $20K a year for treatments.

"That's a price most health insurance companies
actually prefer to pay when compared to the high
costs of misdiagnosis, MRIs, CAT scans and even
surgeries that occur from time to time when patients
suffering from the illness show up at hospital
emergency rooms seeking help," explained Dr.
Carter.

"In order for us to get that designation, the
government had to establish that CFS was,
indeed, a very serious disease. Second, the FDA
had to be shown that there was not any other
adequate treatment and perhaps most
importantly, Ampligen had to be safe to
administer. That is one thing that has never been
withdrawn or questioned by them.


In fact, one insider tells us that in the early days of it's use under the program, the FDA required the company to submit safety reports every month. They did so every month for 150 months. In fact, the reports were delivered with such positive data and accuracy that eventually a top administrator at federal agency grew tired of reading them. He told them to stop.


The CDC, as represented during Thursday's
presentation, has made important commitments to
HEMISPHERx when I comes to CFS.

"We're talking to them two to three times a week
as we compare protocols and treatments,"
explains Dr. Carter. "Because they have vast
resources, they have been prolific in the
publication of research about the disease. They've
published about the severity of the gene
malfunction. This is a major medical research
organization in the world and they recognize that
we are leaders in the field of CFS.


You can't tell me they're not aware of that... I don't
know what the agenda is at TheStreet.Com, but
those guys may as well start selling off their 401K's
because they apparently know very little about
investing. Not only do they manipulate the facts-
they conspicuously don't talk about our
collaborations and data.


The same drug used for CFS has now taken center
stage in the fight against so called swine flu (H1N1).
The company has made headlines in recent days as
it has moved full force into collaboration with health
ministries and scientists in Japan. In fact,
BiomedReports has learned that the company is
officially on the fast ...


Nurse/Attorney/Professor tells it like it REALLY is

Sandra J. Cole

May 19, 2009

CFSAC - Health and Human Services
CFSAC@hhs.gov

To All Whom It Concerns:

My name is Sandra Cole.  I currently live in Utah.  I came down with
ME over 12 years ago following an illness while living in Alaska.  I
am fully disabled by it.  I lost my best earning years to this
disease and now I am at a time of normal retirement and I live
basically on social security.

I am a former university professor, an advanced nurse practitioner,
and a practicing attorney.  I raised three sons on my own from the
time they were young and loved it. I also loved sports, camping,
music, traveling and many other things.  I thought that I would die
on a tennis court at an elderly age.  But, that is not to be.

  I can name the date and time when I became ill.  I was driving to
Anchorage for a doctor's appointment.  I suddenly became nauseated
and very ill, and I had severe dysuria.  That day I was put on
Septra, but although the illness itself abated after three days, the
dysuria remained.  I followed that for over a year and a half locally
and at the University of Utah with a specialist.  My urine was often
times infected, but I could feel the pain without infection.  The
dysuria remains to this day anytime my ME is exacerbated.  Within the
ensuing months I developed esophageal thrush and outbreaks of yeast
over many areas of my body.  It took heavy doses of Fluconasole for
over three months to curb it.  It too recurs to this day.  I am not diabetic.

Next came breathing problems, stomach problems, and heavy
fatigue.  When I dragged my leg and practically collapsed mowing a
small area of the lawn, I knew I had a neurological disease.  I
quickly added aspiration (documented by a cookie swallow) and urgency
incontinency.  And no, neurologists say that I do not have MS. My
Romberg has rarely been normal.  Other neurological tests are also
abnormal on occasions. We have seen small lesions on my brain on
MRI's, along with decreased bloodflow.  My cognitive problems began
and have remained all these years and never gets totally normal. It
is severe at times. Word retrieval can be appalling.   A five year
old child can beat me at memory games, then and now.  I can have loss
of speech – totally for as long as 45 minutes.  Open ended questions
are difficult.  I can understand the question and know that I have
the answer, but I cannot bring up the visual "forest of trees' to be
able to select the answers.  I sit silently in frustration and
physician's and nurses often were impatient with me for not being
able to answer, even though sometimes that physician was a
neurologist at a major university.  Memory problems worsen when I am
tired, but it does not require fatigue to do this.  I've had word
salad, and many times pick up words that start with the same letter
but have a totally different meaning.  I have blanked out on how I am
to get somewhere, even though I have been to that place many, many
times over the years. We all get somewhere by visualizing the entire
trip and when it doesn't come, you have to wait until it comes to
drive onward.  You just sit in a parking lot.

I have a constant tinnitus, severe at times.  Vertigo entered in
about 5 years ago, although light headedness, and frequent loss of
balance have been a problem since the onset.  I have a loss of
hearing in my left ear.  I get extremely sharp shooting pains which
can be anywhere on my body, but are worse when they occur in my eyes.

I built up over the years to being able to leave my home twice a
week, with three to four days of rest in between.  Last January 2008
I caught either a viral or bacterial illness and was set back at
least five years. That was the first time that an illness had ever
caused an exacerbation since the onset.   I simply could not regain
my energy.  Then, in the Fall of 2008, I had a severe sinus infection
which blasted my asthma so that I required oxygen for the first time
for a month.  It lasted over three months, during which time, I was
on antibiotics.  During all of this my ME was very bad.  However,
when I came out of this illness, my ME, to my amazement, was much
better.  The only thing my physician and I could think of was that it
was the antibiotics.  So, I am taking a long course of antibiotics as
we have no other way to go at the present time.

Initially, I had to find out on my own what I had. My neighbor, who
has MS, had Byron Hydes book, as she was initially thought to have
CFS.   CFS was confirmed by a physician.  I was lucky because I was
able to follow it on the web and to read numerous books about it.  I
followed what the CDC has been doing for over ten years.  I am
appalled at what is so apparently an attempt to place this
devastating illness in the psychosomatic category.   I am with a
physician since last October who understands this illness for the
first time in my eleven years.  It's a lonely place out there. The
web and knowing others with it, are the only comfort.

First: the DEFINITION:  You cannot leave out the post physical or
mental exertional illness that occurs.  IT IS THIS DISEASE.  It
causes headaches, nausea, chest discomfort, breathing problems, utter
exhaustion, and aches and pains often to the point of requiring bed
rest.  You cannot broaden the definition so that it includes every
one with fatigue and get consistent findings in studies.  And
including fatigue in the name is devastating.  By one good study
there are over a million people in the U.S. who have this.  Not the
four million claimed by the CDC.  By either number, it is an
epidemic.  Broadening the scope of patients is just another tactic to
make us disappear amongst many other problems.  I believe that
changing the NAME to ME will not cause confusion.  Physicians and
researchers are supposed to be intelligent.  When I was an advanced
nurse practitioner, several things changed names several times over
the years and it did not throw anyone.  ME has a cacophony of
possible signs and symptoms, just as auto-immune diseases have.  We
are not unusual in that sense.  And we are very much like MS.

All studies that the CDC does within their own services or in sending
out studies (to not be done), should be shared with all.   This
secrecy tells us they are doing something wrong, just as we can see
it.  Their data base must be shared with all researchers and parties
interested.  We, too, can read.  Most of the time.   I've lost that
ability occasionally as well.

The CDC has for years included on their website and in their
pamphlets that you should not do any tests for this disease.  The
corollary to that is that "you just might find something."
  We found
that my CD4:CD8 ratio was off in favor of my body fighting viruses.

The pamphlets are still atrocious.  Even though the CDC has admitted
that it is a devastating disease, they make it seem innocuous.  I
will not give any of their pamphlets to anyone.  I have taught many
physicians about this disease.  Some are open, many are not.

We need a marker, which will occur only with a set definition.

Dr. Reeves must go as the head of this disease in the CDC.  Please choose someone who truly has an interest in helping us.  He is practicing in the early 1900's instead of the early twenty-first century.  It is largely a woman's disease and this is clearly male chauvinism at its worst.  Get someone younger and smarter and
dedicated, as this is a catastrophic disease.  We are now in the
stages of "hysterical paralysis" in MS.  Can we not move on?

Thank you for listening.
Please contact me if you have any questions.

Sincerely,

Sandra Cole







 

Dr. Friedberg's Statement to CFSAC


The following is the statement that was presented
by Dr. Friedberg  (new President of the IACFS/ME) to
the HHS Chronic Fatigue Syndrome Advisory
Committee (CFSAC) on behalf of the organization.


Jill McLaughlin

`````
To: Chronic Fatigue Syndrome Advisory Committee


Fred Friedberg, PhD
President
International Association for CFS/ME


Date: May 28, 2009




Re: International Association for CFS/ME's
Recommendations for the CDC's Five Year
Strategic Plan for CFS Research


As president of IACFS/ME, I would like to thank the
CFSAC for this opportunity to comment on the CDC's
5 year strategic plan for CFS research. The new
director at CDC has the opportunity to reinvigorate
CFS research, as well as reinstate CFS as a public
health priority, as emphasized by Dr. Julie Gerberding
at the November 2006 launch of the CDC's CFS public
awareness campaign.


Unfortunately, the CDC's draft five year strategic
research plan lacks sufficient substance and detail.
As such, the IACFS/ME is unable to directly respond
to or endorse this plan. Rather, we suggest a single
critical change in the CDC program:
That change is to make CFS a public health priority.


The IACFS/ME requests that the CDC declare CFS
a public health priority. To achieve this goal, the
CFS community needs strong and visionary new
leadership from the CDC, the recognized world
public health authority, to remove the enduring
stigma associated with being a patient. This
stigma and skepticism about the illness is also a
deterrent to those professionals who would
consider entering the field of CFS as researchers
or clinicians.


CDC's own epidemiologic studies have identified
more than a million CFS sufferers in the U.S. with
as many as 85% still undiagnosed. Further, the
CDC has indicated that CFS is a debilitating illness
with an annual economic impact of at least $9.1
billion.


Yet, CDC sponsors no prevention or clinical
treatment research
. This is a major concern given
these 3 points:

(1) the large number of severely ill and undiagnosed
patients,

(2) the inadequacy of current subjective diagnostic
criteria for CFS, and

(3) the absence of effective, evidence-based
treatment options.



We have put together 8 recommendations that
CDC can enact to make CFS a public health
priority:


1. The CDC needs to identify a CFS program leader
who is a progressive, open-minded, and dynamic
manager with a sense of urgency commensurate
with the pressing needs of the CFS community.


2. The CDC should undertake high profile public and
professional awareness campaigns to fully legitimize
the illness of CFS and reduce its stigma.


3. The CDC should support extramural research into
the pathophysiology of CFS in order to achieve the
critical goals of objective diagnosis and effective
treatment. Such efforts should eventuate in the
identification of biomarkers that will justify:
a.)  a new objective case definition; and b.) the
relabeling of CFS with a more appropriate and
credible name.


4. In the spirit of public resource sharing, the CDC
should make available research study protocols and
the epidemiologic, clinical and laboratory data from
all studies conducted by the CDC's CFS research
program since 1984.


5. The CDC should abandon its use of the empirical
case definition for CFS (http://bit.ly/fwDgO ) and
make a public statement in this regard. The
empirical case definition has been highly criticized
by expert CFS epidemiologists because it is overly
broad and based on subjectively determined criteria
(http://bit.ly/4YZfR ).


6. The CDC should take a pro-active leadership
position by exploring its potential role in developing
an international clinical trials network in
collaboration with clinicians, private industry and
university-based researchers.


7. The CDC should partner with the IACFS/ME, the
only national and international professional
organization representing investigators and clinicians
to develop evidence-based diagnostic and treatment
guidelines for the management of CFS.


8. The CDC should work towards the implementation
of the CFSAC recommendations (http://bit.ly/EgYml ).



We thank the CFSAC for this opportunity to comment
on the CDC's five year strategic plan. Both the CDC
and IACFS should work together to achieve our
mutual goals of establishing new evidence-based
research programs, improving clinical care, and
offering comprehensive healthcare provider
education. Our ultimate objectives are (a) to
eliminate the suffering caused by CFS and (b) to
work toward the eradication of this serious illness.





Journal of IiME - Free Download

~~~~~~~~~~~~~~~~~~~~~~~
Send an Email for free membership
~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
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~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~





Invest in ME - Journal of IiME

Volume 3 Issue 1



Dear Friends


Invest in ME have now published the latest issue of
the Journal of IiME -  a blend of research, science,
facts, politics and real life experiences of ME.

In this issue we have a number of research papers
and some articles relating to perception and
treatment of people with ME and their carers.


The Journal is distributed to all delegates at the 4th
Invest in ME International ME/CFS Conference in
London on 29th May. Invest in ME have decided that
the conference will focus attention on severe ME - a
group which is often neglected by healthcare
services and for which too little research is
performed. The Invest in ME 2008 conference
demonstrated that treatments are available and the
conference poses the question of why swine flu is
different to ME when it comes to provision of drugs.

Great progress is occurring in the biomedical
research into ME and we hope the conference will
illustrate the achievements of organisations who
have a strategy toward research into ME.


To reflect the emphasis on severe ME at the
conference the Journal contains several articles
revolving around severe ME  - amongst them the
story of the Krisner family from Norway. This is a
story showing severe ME and the terrible suffering of
siblings afflicted by this illness. Yet Kjersti Krisner's
story is one of hope when proper examinations and
treatments are applied.

The story from Alison Hunter - Forget M.E. Not - is
story which could have been written today. instead
it was written over a decade ago. With permission of
one of our conference sponsors - the Alison Hunter
Memorial Foundation - we have Alison's included in
the Journal.

To celebrate the new Enterovirus Foundation we
have Professor Steven Tracy who has provided an
article on human enteroviruses and chronic
infectious disease.

Professor Harald Nyland will speak of the Giardia
epidemic in Norway and we resurrect an old article
on epidemics which needs to be seen again.

Professor Garth Nicolson, who will be speaking at
the conference, has contributed two articles - one
showing similarities between ME and autism and
another discussing weight issues with ME and the
use of an all natural oral supplement.

We hope the conference will publish the progress
being made with research into ME. For health
authorities looking to provide a proper biomedical
clinical lead for ME patients we have an article from
a severely affected patient which shows the
frustration and the appalling pain endured when
progress on providing such a servce is hindered
through apathy and ignorance.



``````````


The International ME/CFS Conference 2009 section of
the Journal is available from our web site and also
contains abstracts of the conference presentations.


The Journal continues to be free to download from
Invest in ME.



To view and download the Journals of IiME please
use this link - Journal of IiME: http://bit.ly/3PvOQ


The Volume 3 Issue 1 link is here: http://bit.ly/beqe5





Best Wishes to All


Invest in ME



``````````


Invest in ME

Charity Nr 1114035

Support ME Awareness

www.investinme.org
 
 







 

Medical Mystery Solved

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Medical Mystery ME/CFS solved



To day May 28th at 11 A.M., the members
of the press are invited at a press
conference, which will be held at the Ritz
Hotel in London.


Belgian scientists (Brussels) have
identified causes and mechanisms of the
medical mystery Myalgic Encephalomyelits
(ME)/Chronic Fatigue Syndrome (CFS).


In light of the nature of the discoveries and
its consequences for public health, the
scientists who will be present at this press
conference felt obliged to inform the public
prior to publication of the results in a
medical journal.





Professor Kenny de Meirleir MD, PhD,
(Professor at the Vrije Universiteit Brussels and
Director HIMMUNITAS Foundation Brussels)


would send me his speech for this press conference,
named:

ME: End of an Era of Medical Negation


But there were some changes in the last days and
they will use slides now; instead of the address, I'm
allowed to post now an 'uncorrected' abstract of the
study:


*Research on extremely disabled ME patients
reveals the true nature of the disorder*


He will also speak about this subject at the 4th
Invest in ME International ME/CFS Conference in
London on 29th May.

If I remember well, the ME/CFS urine test, of
which is spoken below, will come on the market as a
"do it yourself test".


So you know in a few minutes, if you are an ME/CFS
patient or not.





Jan van Roijen



````````


Kenny De Meirleir(1), Chris Roelant(2), Marc
Fremont(2), Kristin Metzger(2), Henry Butt(3)


Research on extremely disabled
M.E. patients reveals the true
nature of the disorder


(1) Vrije Universiteit Brussel & HIMMUNITAS
      foundation, Brussels, Belgium
(2) Protea Biopharma, Brussels, Belgium
(3) Bioscreen & Bio 21, University of Melbourne,
      Melbourne, Australia


In this study we compared totally bedridden patients
(Karnofski score 20-30) with less ill ME patients
(Karnofski score 60-70), family controls, contact
controls and non-contact controls.

EBV, HHV6 and Borna virus titers were not different
in the three groups. Plasma LPS distinguished the
groups, with the highest values in the bedridden
patients.

LPS is a strong activator of the immune system and
high plasma concentrations suggest a hyperper-
meable gut. There are many possible causes for this,
but a lack of 'local' energy production is one of
them.

In a separate study (In Vivo, in press) we observed
intestinal overgrowth of Gram positive D/L lactate
producing  bacteria which are also known to produce
H2S in presence of certain heavy metals as a survival
defence mechanism.

We therefore hypothesized that the urine of the
bedridden ME patients would contain more H2S
derived metabolites than the less ill and the
controls. Using a proprietary simple color change
urine test this hypothesis was confirmed.

In the extremely ill, urine added to the yellow color
reagent immediately turns dark blue, whereas
in the less ill the reaction is slower and in the
controls no reaction occurs.

Being a potent neurotoxin, H2S induces photophobia,
intolerance to noise, mitochondrial dysfunction by
inhibition of cytochrome oxidase and depresses the
cellular immune system and induces neutropenia
and low numbers of CD8+ lymphocytes.


Its effects, at least in part explain the clinical
condition of the severely disabled ME patients.

Furthermore the effects of the bacterial H2S induces
increased ROS production by the liver and
retaining of heavy metals particularly mercury in the
body.

The latter is also neurotoxic, induces apoptosis
and interferes with the aerobic metabolism. Chronic
increased production of H2S by intestinal bacteria
leads to build-up of mercury in the body as proven by
a Zn DTPA/DMPS challenge test.

Finally in 20% of the ME patients (in the severely ill)
we found using a special luminescence technique
aberrant prions which also interfere with the energy
metabolism.

These patients have gone on to develop A.P.D.
(aberrant prion disease – patent pending). These
aberrant prions give rise to a transmissible disorder.
10% of the A.P.D. patients have very high prion
counts in their saliva and can directly transmit it to
others.

APD patients can transmit these proteins via blood
and likely also through sexual contact which then can
give rise to slowly developing aberrant prion disease.

In a separate experiment 40 healthy blood donors
were screened for A.P.D. One individual tested very
positive, indicating that apparently healthy
individuals can already be carriers and that blood
transfusion carries the risk of transmitting A.P.D.


In conclusion, ME is a disorder which is caused by
increased endogenous H2S production. For the latter
many  factors can be present.

Because of the effects of H2S in the body a chain of
events will develop which have more and more
negative effects on the aerobic metabolism and
depression of the immune system leading to  more
and more infections and reactivation of endogenous
viruses.

In its final stage aberrant transmissible prions
develop which put the patients in a total energy
depleted state
.







 

Learning to cope with chronic illness - Pacing

A study evaluating an alternative approach to CBT/GET has been accepted for publication in an international journal. It is entitled: Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome.

The sample were diagnosed using published clinical criteria for post-infectious fatigue syndrome and the intervention included ongoing medical care.  Together with other studies, e.g. Jason et al 2007, Taylor 2006, the findings provide good evidence for the efficacy of multicomponent programmes which are not based on the CBT  model of CFS. It also offers further support for the strategy of pacing as described by Goudsmit and Howes, and Jason et al.

The paper will be listed on PubMed (and I presume, Co-cure) when available online for purchase.

This article represents the end of my 20 years of research into ME and post-infectious fatigue syndromes. I shall, however, continue to edit the ME and CFS References (available on url below). 

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

Ellen M. Goudsmit PhD CPsychol AFBPsS
Chartered Health Psychologist

Revised methylation protocol

Thanks, Rich!
 
For anyone who is currently following or is considering the Simplified Treatment Approach for lifting the methylation cycle block and restoring the glutathione levels in CFS, I want to advise you of a change in the protocol.  Metagenics has changed the formulation of their product Intrinsi/B12/folate, which was included in the original protocol, so that it no longer contains folinic acid (5-formyl tetrahydrofolate).  Therefore, I am now recommending that another Metagenics product, Actifolate, be substituted in the protocol, at the same dosage.

Here is a description of the revised protocol:
                                                                                       
SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME (Revised)

(Extracted from the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

FolaPro      [2]:  ¼ tablet (200mcg) daily

Actifolate       [3]:  ¼ tablet daily

General 20 Vitamin Neurological Health Formula [4]: 
     start with ¼ tablet and work up dosage as tolerated to 2 tablets daily

Phosphatidyl Serine Complex [5]:  1 softgel capsule daily

Activated B12 Guard [6]:  1 sublingual lozenge daily 

      All these supplements can be obtained from http://www.holisticheal.com ,
or all but the third one can be obtained from other sources.

     The first two supplement tablets are
difficult to break into quarters. We recommend that you obtain (from any
pharmacy) a good-quality pill splitter to assist with this process. They can,
alternatively, be crushed into powders, which are then separated on a flat
surface using a knife or single-edged razor blade, and the powders can be mixed
together.  They can be taken orally with water, with or without food.

     These supplements
can make some patients sleepy, so in those cases they take them at bedtime.  They can be taken at any time of day, with or without food.  

     GO SLOWLY.  As the methylation cycle block is lifted,
toxins are released and processed by the body, and this can lead to an
exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other
day.  SLOWLY work up to the full dosages.

     Although this treatment approach consists only of nonprescription nutritional supplements, a
few patients have reported adverse effects while on it.  Therefore, it is necessary that patients be supervised
by physicians while receiving this treatment.



[1]  Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.

[2]  FolaPro is a registered trademark of Metagenics, Inc.

[3]  Actifolate is a registered trademark of Metagenics, Inc.

[4]  General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.

[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.

[6] Activated B12 Guard is a registered trademark of Perque LLC.

Rich Van Konynenburg, Ph.D.





 

Microbiota in IBS

*As Irritable Bowel Syndrome may be co-morbid in some subgroups of patients
with ME or the ME/CFS this study documenting  immune factors and a
post-infectious variable adds to the biomedical literature. However, another
factor regarding IBS that should be noted is possible misdiagnosis of IBS
because common gastrointestinal symptoms of OI are misinterpreted.
*

* *Am J Gastroenterol 2008
Jun;103(6):1557-67. Epub 2008 May
29.
Gastrointestinal microbiota in irritable bowel syndrome: their role in its
pathogenesis and treatment. *Parkes
GC* http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Parkes%20GC%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus ,
*Brostoff J* http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Brostoff%20J%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus,
*Whelan K* http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Whelan%20K%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus ,
*Sanderson JD* http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=Search&Term=%22Sanderson%20JD%22%5BAuthor%5D&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_RVAbstractPlus
.

Diet and Gastrointestinal Health, Nutritional Sciences Division, King's
College London, London, United Kingdom.

Irritable bowel syndrome (IBS) is a chronic disorder characterized by
abdominal pain, change in bowel habit, and bloating. It has traditionally
been viewed as a disorder of visceral hypersensitivity heavily influenced by
stress, and therefore therapeutic strategies to date have largely reflected
this.

However, more recently, there is good evidence for a role of the
gastrointestinal (GI) microbiota in its pathogenesis. Changes in fecal
microbiota, the use of probiotics, the phenomenon of postinfectious IBS, and
the recognition of an upregulated host immune system response suggest that
an interaction between the host and GI microbiota may be important in the
pathogenesis of IBS.

This article explores the role of the GI microbiota in IBS and how their
modification might lead to therapeutic benefit.






 

Defining "Fatigue"

http://tinyurl.com/p9rnu6

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
reassessed.

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
suffering.

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
"fatigue"?

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
different meanings.

And now that broken double entendre of a word is being used to name a
medical journal.

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
entendre.

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.

Sincerely,

Stephen Ralph DCR(D) Retired. www.meactionuk.org.uk
 

* * *
Like Dr. Ralph, the word "fatigue" has been the bane of my existence.  Once you say that, everyone leaps to the conclusion you're simply depressed and ignores all the other symptoms that point away from depression.
 
Like Dr. Ralph, my infection/inflammation went completely untreated while I was plied with useless psychotropic drugs and ordered to stop faking, just go back to work.  Obviously, an infection can't be faked, it's not a figment of a hypochondriac's imagination, and someone with an infection belongs in a hospital bed not a workplace.
 
Eventually, I got a C-Reactive Protein test, which shows infection/inflammation, which was "off the charts", so high the doctor was convinced it had to be lab error until the re-test was even higher.  THAT'S how sick I really was, while being verbally abused for being "just lazy" and lying about any symptom that didn't fit in with the doctor's desired diagnosis of "all in your head".
 
By the time I got the proof that I really was physically sick, it was too late -- the infection/inflammation had caused permanent physical damage.  Maybe if every CFS patient would institute a malpractice lawsuit against doctors whose "treatment" leaves them in worse condition, the medical profession would take notice that CFS has biological underpinnings.  But as long as they get away with it, they'll continue to dole out anti-depressants and verbal abuse instead of looking for the real cause for your symptoms.  Even the symptoms that prove it's not depression are dismissed because for too many doctors, "fatigue" is merely a synonym for depression and not something worth a full work-up. 




Epidemic Myalgic Encephalomyelitis

Permission to repost



To the CFSAC:



Epidemic Myalgic Encephalomyelitis: A Demand for Urgent
Action and Accountability



The CDC has systematically failed its mission to protect
the health of the global community with regard to the uncontrolled spread of the
pandemic neurological and multiple systemic disease Myalgic Encephalomyelitis,
to prevent the chronic lifelong disability, suffering and needless deaths it
has wreaked on the lives of millions of people around the world since the CDC
became negatively involved with this infectious disease 25 years ago while in
the midst of the AIDS pandemic. The CDC ignored the growing epidemics, the Cheney/Peterson biomarkers and historical evidence by constructing CFS and pretending it was a new condition.



It has failed to educate the public about the 75 year
epidemic history of M.E., to educate the medical profession with appropriate
guidelines to care for the patients, to fund research and provide treatments
for the disease, and critically to ban blood donations and stop the spread of
this disease. It has failed its mission and goals, denying the epidemics,
focusing wrongly on fatigue and psychosocial factors, pursuing meaningless
research studies, and subjecting sufferers to uninformed medical neglect and
human rights abuses. Advising doctors not to do the very tests that would
confirm the disease? That is CDC policy.



It began with a botched investigation of a major outbreak
of M.E. in a tourist village at Lake Tahoe, where the CDC ignored the
biomarkers found by Drs Cheney and Peterson which validated the disease, and
continuing to the present day with its 25-year marketing exercise in rebranding
this serious disease similar to M.S. and Post Polio Syndrome as CFS, renaming
and redefining it as a vague fatigue state via the unscientific Fukuda and
Holmes definitions and further reducing it to a "stress-related disorder" using
the 2005 Reeves "empirical" definition – a subjective questionnaire about
"unwellness". CFS is known as the wastebasket diagnosis - for it describes all
states of "chronic fatigue" and has been the subject of intense psychiatric
speculation and abuse. Severely affected patients are not believed, and many
are so desperate they take their own lives. Sick children have been removed
from their families, what kind of society allows this?



The first recorded epidemic was initially described by
the U.S. Surgeon General A.G. Gilliam as Atypical Poliomyelitis in 1934. After
an epidemic affecting the doctors and nurses at the Royal Free Hospital in
1955, M.E. was named by Sir Donald Acheson in 1956 and described by A.L. Wallis
in 1959. The distinguished neurologist Lord Brain
included it in the standard textbook of Neurology in 1962. Drs Melvin
Ramsay and John Richardson had Benign Myalgic Encephalomyelitis recognised by
WHO in ICD-8 at Code 323 under Diseases of the Central Nervous System in the
1969 edition of the WHO-ICD.



Why was M.E. moved to Code G93.3 Other Disorders of the
Brain with CFS listed as a synonymous term – can the CDC explain why it is now
in this odd category with various unrelated entries? The
CFS definition does not describe the neurological disease M.E. and severely
undermines its biomedical credibility. The US – in ignorance of the
official name and neurological classification of the disease? – then referred
to the continuing epidemics as Epidemic Neuromyasthenia until the fateful
outbreaks in the 1980s.



In 1978 the Royal Society of
Medicine held a symposium on ME at which ME was accepted as a distinct entity
and The Ramsay case description was published in 1981. In response to massive
outbreaks in the 1980s, the CDC rebranded the disease as CFS, placed it in the National
Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases
Branch, designated it for funding status as "A
serious legitimate diagnosis CDC PRIORITY 1 disease of public health
importance", and then failed to fund it adequately, promoted it as a
recoverable fatigue state, and acted to eradicate all knowledge of the M.E.
Researchers could not get M.E. research published as they had to abide by the
CDC's name and definition.



The CDC did not fulfil its
obligation to protect the public, it proceeded on a program of denial, failing
to alert the public or the responsible health agencies of this serious public
health threat, failing to ban blood donations and contain the disease, and
indulging in a funding scandal in which William Reeves was involved. The NIH has also failed its mission to research the disease, hiding it under CFS at the Office of Research into Women's Health (ORWH) with a paltry budget, rather than
placing M.E. at the National Institute of Neurological Disorders and Stroke (NINDS) alongside similar diseases as M.S. and Post Polio Syndrome, where it should have a budget on a scale commensurate with the fact that more people are affected by M.E. than M.S. and are just as severely disabled.



The CDC website on CFS continues to ignore the wealth of accumulating evidence: "As yet, there
are no diagnostic tests or laboratory markers for CFS, and its pathophysiology
remains unknown. … Various terms are often used interchangeably with CFS. CFS
is the preferred term because it has an internationally accepted case
definition that is used in research and clinical settings ... The name myalgic
encephalomyelitis (ME) was coined in the 1950s to clarify well-documented
outbreaks of disease; however, ME is accompanied by neurologic and muscular
signs and has a case definition distinct from that of CFS." There is no definition of M.E. that they recognise, not the Ramsay definition or the 2003 Canadian definition, despite the documented M.E.
epidemics, testable abnormalities, and compelling evidence of enteroviral
contagion and severe neurological and systemic dysfunction.



The CFSAC needs to act firmly, stop acting like a
bumbling committee and listen to the expert patient testimony that has been
telling them for years of the urgent need to recognise Myalgic
Encephalomyelitis and for accountable leadership. The CDC is not leading the
world as it claims but has again been caught out in funding abuses; and
independent research has had to step in - it is The Chia Enterovirus
Foundation, The Whittemore Peterson Institute, MEResearchUK and The (ME)CFS
Research Foundation that are unravelling this complex disease. The NIH must also act responsibly and place M.E. at NINDS where researchers can look at the similar etiologies and pathological processes of diseases like M.S. and Post
Polio Syndrome.



The unstated objective of the 5-year "CFS" strategic
research plan is to continue to study CFS as a stress-related disorder by
following the false UK psychiatric model, which produced the dangerously flawed
NICE Guidelines for CFS/ME - for vaguely defined "chronic fatigue" patients -
and the funding of chronic fatigue clinics which are detrimental to M.E.
patients and deprive them of the medical care that they would receive if M.E.
was a recognised neurological disease. The vague goals of the Draft Strategic
Research Plan General Outline use the keywords favoured by the psychiatric
model – psychosocial, psychoneuroendocrinologic, risk factors, management,
intervention, and absurdly to move CFS - the wastebasket diagnosis - into the
mainstream of public health concerns. That is the CDC's policy – to focus on a
meaningless wastebasket diagnosis instead of the urgent and desperate need for
Myalgic Encephalomyelitis research?



A decision 25 years ago to alert the public to the M.E. pandemic as they have done with the recent H1N1 flu outbreak would have been the responsible action of the CDC in this regard, and recognition of the
pathological biomarkers discovered in the 1980s should have validated the
serious nature of the disease as technological advances did for M.S. in the
1950s. Knowledge of the previous epidemics would have apprised all medical
personnel of the parallels with poliomyelitis and enteroviral etiology, enabled
early detection in the acute stage of the disease, created demand for a massive
injection of funding for research into etiology, pathophysiology and
treatments, and the prevention of long term disability. Medical treatments
would be approved now to stop the suffering and needless deaths that have been
ignored or cruelly stigmatized by warped concepts of fatigue and somatisation.



Given the failure of the CDC to alert the public and contain this pandemic, a Congressional Inquiry into this appalling state of affairs is long overdue and desperately needed - after 25 years the pandemic is still hidden, the numbers of patients neglected by the medical profession are growing and the hidden death rate is steadily climbing. The CDC has had every
opportunity to correct this over the last 25 years, and the CFSAC must also
correct itself and provide strong leadership now. It is inevitable that private
research organizations will unravel the truth about the disease and patients
suffering for decades or diagnosed with M.E. - before the CDC intervened with
its CFS wastebasket diagnosis - will not give up the quest for the truth about
Myalgic Encephalomyelitis.



The CFSAC must respectfully consider how it is
contributing to the human rights abuse caused by the CFS construct, and
demonstrate that it is forcefully acting in the best interests of these
severely ill and neglected patients by becoming the Myalgic Encephalomyelitis
Advisory Committee, strongly demanding the reinstatement of Myalgic
Encephalomyelitis and the adaptation of a research version of the Canadian
Consensus Guidelines, the only medically relevant guidelines with *diagnostic tests* and treatment
suggestions.



CFS patient organisations also need to acknowledge their
part in promoting the CDC's CFS construct and stop the name game of CFS, CFIDS,
ME/CFS, CFS/ME, ME/CFS/PVFS and Myalgic Encephalopathy, all of which feed into
the uncertainty and disbelief that discourage medical and public understanding
of the disease. Please stop supporting the misinformation, publicise all the
historical and current medical facts and persistently demand that Myalgic
Encephalomyelitis is urgently recognised and on the public agenda.



If anyone wants to quibble about whether the name is
technically correct then carefully consider the extensive history of M.E. and
how the CFS construct has delayed valuable research and progress, and prolonged
the suffering of M.E. patients. Only when thorough research has been conducted
on strictly defined and also severely affected M.E. patients can we question
whether the name – classified by WHO for 40 years and known around the world
for over 50 years – is still medically appropriate, or not.



John Anderson



References:



1)  Enteroviral Myalgic Encephalomyelitis – EvME
[ME/CFS]. A treatise on EvME by Dr Irving Spurr

http://www.meresearch.org.uk/information/keypubs/EvME.pdf



2)  Myalgic Encephalomyelitis (Chronic Fatigue
Syndrome) – Research References Update

http://www.meactionuk.org.uk/Research_References_Update_Dec_08.htm



3)  Reference Index Of Papers Published On
Epidemics of ME 1934-80 (collected by Dr J. Gordon Parish)

http://www.meresearch.org.uk/information/publications/ResearchPublications1934-1980.pdf



4)
The Late Effects Of ME - Can they be distinguished from the Post-Polio
Syndrome?

Dr. E.G. Dowsett MB, ChB Dip Bact.
Honourary Consultant Microbiologist, Basildon and Thurrock Hospitals NHS Trust

http://www.mefmaction.net/Patients/Articles/Diagnosis/EffectsofMEED/tabid/225/Default.aspx



5)  What is ME? What is CFS? Information For Clinicians And Lawyers –
Prof Malcolm Hooper et al

History and
classification of ME, How "CFS" displaced ME in the UK

http://www.investinme.org/Article-020%20What%20is%20ME%20What%20is%20CFS.htm



6)  Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and
Guidelines for Medical Practitioners

An Overview of the Canadian Consensus Document -
Carruthers, van de Sande et al

http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf



7)  The Clinical and Scientific Basis of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome

Byron
Hyde, Jay Goldstein, Paul Levine – Published by The Nightingale Research
Foundation

http://www.nightingale.ca/



8)  Osler's
Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic -- Hillary
Johnson

http://oslersweb.com/index.htm



9)
The Committee for Justice and
Recognition of Myalgic Encephalomyelitis

The History, Science and Politics Affecting Patients Disabled by M.E. around The Globe

http://www.geocities.com/tcjrme/

 
* * *
 
I'll verify that.  I used to be a regular blood donor, and it took moving to another city to get the blood bank to stop calling me.  My specialist had told me not to donate; if they didn't want blood from people with AIDS, then they wouldn't want blood from people with what was called "AIDS Lite".  But the blood bank was only concerned with whether I was HIV+, not what other viruses I might be carrying.  Would you want to risk a transfusion that might give you an incurable disease?
 
Fortunately, it appears from further research into the similarities between CFS and polio that the virus may only be contagious for a few days in the initial stages, and is then replaced with antibodies.  But still, it's not a risk that CDC should be exposing people to until they are absolutely positive that the recipient is not going to get CFS on top of what they're already suffering.