Thursday, June 21, 2012

Reposting another oldie: More on CFS and Polio

Click here:
Dr. Dowsett recommends: "M.E. Research workers must be encouraged and appropriately funded to work in this field. However they should first be directed to papers published before 1988, the time at which all specialized experience about poliomyelitis and associated infections seem to have vanished mysteriously!"
R.I.P. Dr. Dowsett, and thanks for all you did for us!

R.I.P. Dr. Dowsett

Dr. Betty Dowsett, 1920 – 2012 | consultant microbiologist who championed M.E.
by Tony Britton on June 21, 2012

Tributes to the memory of Dr Betty Dowsett have begun to flood the
internet after news spread today of her death a week ago on June 14.
Dr Dowsett, who was aged 91, had been living in a nursing home in
Cambridge for some years.

Dr Dowsett collaborated with the likes of Dr John Richardson and Dr
Melvin Ramsay in their various studies into M.E. and, with Professor
Leslie Findley, she helped set up the National ME Centre in Oldchurch,
Essex. In latter years, she also worked with Jane Colby, executive
director of the Young ME Sufferers Trust, on a groundbreaking study
into M.E. as the cause of major long-term sickness absence from
school. This achieved major coverage in the national press.

The young Betty Scott was born in Newport, Gwent, and studied medicine
at Edinburgh University.

Simon Lawrence, chairman of the 25% Group of severe ME sufferers, had
this to say about Dr Dowsett earlier today:

"She was one of the last remaining of the group of doctors from the
Ramsay era who believed in ME as it really is,
unlike today where we
have all sorts of theories and scandalous activities that are truly
harming people with ME. People are dying of ME and people are left
paralysed by ME. Dr Betty Dowsett was someone who was truly upset
about this and who worked day and night to help change the situation
and even fought in the face of the establishment and other ME
organisations that she felt were 'dumping down' ME.

In a world where we are so often left to suffer and be denigrated as
ME sufferers, it was refreshing to meet someone who really did care
and, at the same time, who never sought monetary gain from her
services or some selfish recognition for doing what she felt was

Greg Crowhurst, whose wife Linda has had severe ME for many years, blogged:

"We have just heard the incredibly sad news that Dr Betty Dowsett, one
of the very few doctors who knew that ME was a genuine neurological
disease, who actively validated patients in a sea of psychiatric
fatigue nonsense, a doctor who worked alongside Dr Melvin Ramsay, who
knew the truth has died.

Betty Dowsett helped people,by protecting against the psychiatric
untruth that has spread like wildfire throughout the UK since the
1980′s, by accurately diagnosing them, by actively supporting them.

Not only did Betty help many people, for free, including Linda to get
a proper Severe ME diagnosis, at a clinic she paid for herself,
because the need was there, she also stayed in touch, supporting
people in getting their benefits and providing ongoing medical advice.

Deeply committed to people with ME, Betty Dowsett was a genuinely good
and honourable person who lived the doctor's oath to do no harm; much
more than that she stood up for truth and in the process saved many
lives – including Linda's.

Dr Betty Dowsett was a giant in the ME world; her loss is immeasurable
and irreplaceable."

The funeral will be held on Friday, June 29. The family have asked
that, instead of sending flowers, people should make donations
directly to the M.E. charity of their choice.

Cards should be sent to The Family of Betty Dowsett, c/o The Cottenham
Court Nursing Home, High Street, Cottenham, Cambridge CB24 8SS (but do
not send donations with yours cards).

26,000 die prematurely without health insurance


A national health care consumer advocacy group estimates that three Americans die every hour as a result of not having health insurance.  

Wednesday, June 20, 2012

Chase Community Giving 2013

A new Chase
Community Giving (CCG) Contest began June 12, 2012. Millions of dollars will be given to non-profits. In previous CCG Contests,
ME/CFS organizations have won a combined total of $185,000 (PANDORA, The CFIDS
Association, the WPI, IACFS/ME, cfsknowledgecenter, and Massachusetts CFIDS).
Previous winners are ineligible in the current contest.

The CCG Contest
is for 501(c)(3) public charities, which were listed at as of 12/31/2011. To be
eligible, charities must have annual operating expenses of under $10 million
and must meet all eligibility requirements at

There will
be 196 winners in the National Contest. The prizes are as follows:

One $250,000
prize to the top voter-getter; and runners-up: ten $100,000 prizes; thirty-five
$50,000 prizes; fifty $20,000 prizes; and, one hundred $10,000 prizes.

Nomination Period runs through July 9, 2012. This year charities
must be nominated by a Chase customer with online Chase access at The Chase customer
may nominate an unlimited number of organizations, but may not nominate the
same charity twice. The list of charities eligible to be nominated are accessible to online Chase customers at

Early Charity
Acceptance Period starts August 6, 2012 and ends August 30, 2012. All eligible
charities which accept the nomination by August 30, 2012 will share in a
special $2.5 million grant (separate from the contest prizes) if they receive at least one vote during the Voting Period.

Charity Acceptance Period begins August 31, 2012 and goes through September 19,
2012. Eligible charities which did not previously accept the nomination may do
so during this period. An eligible charity must accept the nomination by September
19, 2012 to be eligible for a National Program prize.

The Voting
Period lasts from September 6, 2012 to September 19, 2012. Eligible voters
include Facebook users and Chase customers with online Chase access. Online
Chase customers get two votes to be used for two different charities. Facebook
users must allow "Access" to the CCG application to receive two votes. These
votes must be cast for two different charities. Facebook users may earn a Bonus
Vote by allowing "Access" to the CCG app and sharing information from the app
with their Friends on Facebook. If one of their Facebook Friends accesses the
app and votes, a Bonus Vote is awarded to the original voter. The Bonus Vote
may be cast for any eligible charity, including a charity for which the voter
has already cast a vote. Facebook users who are also online Chase customers may
cast two votes for the same charity—one through Facebook and one at If they receive a
Bonus Vote, they are allowed to vote a third time for the same charity. Chase
online customers who are Facebook users and also receive a Bonus Vote receive the maximum number of five votes.

Winners will
be announced around September 20, 2012.

For Complete Rules, please go to


Two Quotes of the Day

Watergate Trivia: The wife of attorney general John Mitchell and an early member of CRP (Committee to Re-Elect the President), Martha Mitchell sounded a frequent warning about the committee's misdeeds. But her outsized personality and rumoured drinking problem led many to disregard her. Later, psychologists coined the phrase "Martha Mitchell effect", used when people are diagnosed as mentally ill because they're telling a truth that seems too outrageous to believe. - BBC News
Don't be distracted by criticism.  Remember, the only taste of success some people get is to take a bite out of you.

We're in good company!

Watergate Trivia: The wife of attorney general John Mitchell and an early
member of CRP (Committee to Re-Elect the President), Martha Mitchell
sounded a frequent warning about the committee's misdeeds. But her outsized
personality and rumoured drinking problem led many to disregard her. Later,
psychologists coined the phrase "Martha Mitchell effect", used when people are
diagnosed as mentally ill because they're telling a truth that seems too
outrageous to believe. - BBC News

The truth about CFS also seems too outrageous to believe.

People who eat right and exercise daily are not supposed to get sick, much
less THIS sick. Viruses are supposed to go away in a week, not make you
sick the rest of your life.

The only way they can reconcile this is to call us crazy.

Nutrition Tips


Eat More of These…

Fish. It's rich in omega-3 fatty acids, which are an essential part of a heart-healthy diet. That's good news since people with lupus are at risk of developing heart disease and other cardiovascular problems. The American Heart Association recommends eating two servings—about 3.5 ounces of cooked fish—per week.

At the store, look for fatty fish, which is high in omega-3 fatty acids. Examples include salmon, mackerel, herring, lake trout, sardines, and albacore tuna.

Dairy products and leafy veggies. These foods are packed with calcium and vitamin D. The dynamic duo work together to keep your bones strong. This is important because people with lupus have an increased risk for osteoporosis. The disease may occur as a result of lupus itself or because of certain lupus medications, such as glucocorticoids, that can lead to bone loss.

Fortify your frame with leafy dark green vegetables, such as spinach and broccoli, and low-fat dairy products, including milk, cheese, and yogurt.

Tomatoes and potatoes. Lupus ups your chances of having high blood pressure, a risk factor for coronary artery disease. However, adding foods high in potassium helps reduce the impact that salt has on your blood pressure.

Strive to eat about 4,700 mg of potassium per day. Besides tomatoes and potatoes, potassium is also found in orange and grapefruit juice, raisins, lettuce, and papayas.

Eat Less of These…

Alfalfa. It may seem like a random item on a do-not-eat list, but it's important to steer clear of alfalfa seeds and sprouts. Compounds in alfalfa may trigger the immune system, increase inflammation, and set off a lupus flare. No, thank you!   

10 Foods That Fight Pain

10 Foods That Fight Pain
| |
There's no proven "anti-arthritis diet," but certain foods may make a difference in your symptoms
Read more
Relieving the Top 7 Causes of Chronic Pain
| |
Chronic pain is often a symptom of conditions like fibromyalgia and carpal tunnel syndrome. Treat the condition and you may ease the agony
Read more

Tuesday, June 19, 2012

Proposed relationship between Lapp-Cheney B12 treatment and methylation treatme

Proposed relationship between Lapp-Cheney B12 treatment and methylation treatment
I think I now understand better why Drs. Lapp and Cheneyfound in the 1990s that a high dosage of injected vitamin B12 (they initiallyused cyanocobalamin) gave their ME/CFSpatients an increase in energy, stamina, or well-being within 12 to 24 hours,which lasted for two to three days, and why the dosage had to be so highcompared to the RDA for B12 (2,000 to 2,500micrograms per injection, compared to 2.4 micrograms per day) (as reported in the CFIDS Chronicle in 1993 and 1999). I also think I now understand better how thisfits in with the methylation-type treatments, which can bring greaterimprovement on a more permanent basis.

Here's my suggested explanation:

It is known that normally after vitamin B12 is absorbed bythe gut, it is transported in the blood to the body's cells, bound to thecarrier transcobalamin. After enteringthe cells, the B12 normally passes through an intracellular processing pathway,which produces the appropriate amounts of the two active coenzyme forms of B12needed by the cells, i.e. adenosylcobalamin and methylcobalamin.

Adenosylcobalamin acts as a coenzyme in the mitochondrialmethylmalonate pathway, which feeds certain substances into the Krebs cycle tobe used as fuel for making ATP. Thesesubstances are isoleucine, valine, threonine, methionine, the side-chain ofcholesterol, and odd-chain fatty acids.

Methylcobalamin acts in the cytosol as a coenzyme for themethionine synthase reaction, which links the methylation cycle with the folatemetabolism and also helps to govern the flow into the transsulfuration pathway,which feeds the synthesis of glutathione, among other reactions.

One of the key parts of the intracellular processing pathwayfor vitamin B12 is called the CblC complementation group. This group normally binds cobalamin in orderto carry on its processing. The strengthof this binding, called the affinity, depends strongly on the presence ofglutathione. A recent study by Jeong andKim (2011, PMID: 21821010) using bovine CblCand cyanocobalamin, found that glutathione, which is normally present in thecells, raised this affinity by a factor of over one hundred.

In ME/CFS, we have foundthat glutathione becomes depleted. Thatbeing the case, we can expect the affinity of CblC for cobalamin to dropconsiderably. The effect of this wouldbe to lower the rate of production of both adenosylcobalamin andmethylcobalamin. The effect of lowering adenosylcobalaminis to decrease the fuel supply to the Krebs cycle and hence to lower the rateof production of ATP. The effect oflowering methylcobalamin is to partially block the methionine synthasereaction, lowering the methylation capacity, and draining the methylation cycleand disrupting the sulfur metabolism in general. The methyl trap mechanism then continues toconvert other forms of folate into methylfolate, and this is partly catabolizedby reaction with peroxynitrite which forms as a result of the glutathionedepletion. The folates thus becomedepleted, and a chronic vicious circle mechanism is set up.

Now, consider what happens when a high dosage of B12 isinjected, as in the treatment discovered by Lapp and Cheney. When the dosage is high enough, the lowaffinity of the CblC complementation group for cobalamin is overcome, so thatthe rates of production of adenosylcobalamin and methylcobalamin are able tocome up, perhaps even to normal levels. I suggest that this affinity problem is the reason for the need for sucha high dosage of B12 to obtain a therapeutic effect.

The added adenosylcobalamin would support the methylmalonatepathway, and more fuel would be supplied to the Krebs cycle, which would raisethe rate of production of ATP. I suggestthat this is what causes ME/CFS patients toexperience a boost in energy, stamina or well-being on the high-dose injectedB12 treatment. This is particularlysignificant in ME/CFS, because carbohydrateand fat metabolism is hindered due to the effect of glutathione depletion onthe aconitase reaction, early in the Krebs cycle. Note also that deficiencies in some of theB-complex vitamins can interfere with obtaining this benefit, because they arealso needed by the methylmalonate pathway.

However, I suggest that even though methylcobalaminproduction would also rise, the partial block of the methionine synthasereaction would remain if B12 alone is given, and this is the reason for thelimited benefit of that treatment. The reason why B12 treatment alone will notcorrect the partial block in methionine synthase is that there is insufficient methylfolateavailable to feed this reaction. Thereason for that, as Prof. Martin Pall has pointed out, is that the level ofmethylfolate has been lowered by reaction with peroxynitrite. Peroxynitrite has risen because of the stateof oxidative stress that ensues when glutathione is depleted.

If methylfolate is added in addition to adding high-dosageB12, the partial block of methionine synthase can be lifted, which can thenbreak the vicious circle mechanism that holds glutathione down. Over time, as glutathione rises, the affinityof CblC for cobalamin will also rise, and supplementation of high-dosage B12will no longer be necessary. Likewise,peroxynitrite will drop as glutathione is restored, so that supplementation of methylfolatewill no longer be necessary, either.

Rich Van Konynenburg, Ph.D.

Skewed Results? Failure to Account for Clinical Trial Drop-Outs Can Lead to Erro

Note: Many times when subjects drop out of trials authors use Lost
Observation Carried Forward (LOCF). The Last Observation Carried
Forward (LOCF) imputation method is often used when
data are longitudinal (i.e. repeated measures have been taken per
subject by time point). The last observed non-missing value is used to
fill in missing values at a later point in the
study. However the assumption is that the subject didn't leave the
trial because of adverse effects. Another way of dealing with this
issue is to exclude all data from subjects who dropped out, but this
can bias results as well.

Similar issues have been raised regarding behavioral interventions
such as CBT and GET. ""There is limited evidence about adverse effects
associated with behavioural interventions. Withdrawals from treatment
in RCTs suggest that there may be an issue but the evidence is often
difficult to interpret because of poor reporting." Chambers et al 2006

Skewed Results? Failure to Account for Clinical Trial Drop-Outs Can
Lead to Erroneous Findings in Top Medical Journals

Up to a third of clinical trials studied that found an intervention
effective might, in fact, be wrong
According to Professor Akl of UB, it has always been suspected, but
never proven, that loss to follow-up introduces bias into the results
of clinical trials.

Release Date: June 13, 2012

Buffalo, N.Y. -- A new University at Buffalo study of publications in
the world's top five general medical journals finds that when clinical
trials do not account for participants who dropped out, results are
biased and may even lead to incorrect conclusions.

Published recently in the British Medical Journal, the methodological
study (at consisted of a
systematic analysis of 235 clinical trials published in the world's
top five general medical journals between 2005 and 2007 that claimed a
statistically significant effect.

"We found that in up to a third of trials, the results that were
reported as positive -- in other words, statistically significant --
would become negative -- not statistically significant, if the
investigators had appropriately taken into consideration those
participants who were lost to follow-up," says Elie A. Akl, MD, MPH,
PhD, lead author, and associate professor of medicine, family medicine
and social and preventive medicine at the University at Buffalo School
of Medicine and Biomedical Sciences and School of Public Health and
Health Professions. He also has an appointment at McMaster University.

"In other words, one of three claims of effectiveness of interventions
made in top general medical journals might be wrong," he says.

In one example, a study that compared two surgical techniques for
treating stress urinary incontinence found that one was superior. But
in the analysis published this month, it was found that 21 percent of
participants were lost to follow-up. "When we reanalyzed that study by
taking into account those drop-outs, we found that the trial might
have overestimated the superiority of one procedure over the other,"
Akl says.

According to Akl, it has always been suspected, but never proven, that
loss to follow-up introduces bias into the results of clinical trials.
"The methodology we developed allowed us to provide that proof," he

The methodology that he and his coauthors developed consists of
sensitivity analyses, a statistical approach to test the robustness of
the results of an analysis in the face of specific assumptions, in
this case, assumptions about the outcomes of patients lost to

"This study gives us a better understanding of the problem of loss to
follow-up in clinical trials and provides us with better tools to
address it," Akl says.

"This methodology will allow those who conduct the trials and those
who use their results, including clinicians, other scientists,
developers of clinical guidelines, policymakers and bodies like the
Food and Drug Administration, to better judge the risk of bias,"
concludes Akl.

The studies that were analyzed had previously been published in Annals
of Internal Medicine, British Medical Journal, the Journal of the
American Medical Association, Lancet and the New England Journal of
Medicine. To be included, the trials that were studied had to have
reported a significant effect.

Akl led this major study, funded by Pfizer, which took three years to
complete. His co-authors, 20 clinical epidemiologists, are from the
following institutions: McMaster University; University Hospital
Basel; Kaiser Permanente Northwest; Hospital for Sick Children in
Toronto; Institute for Work and Health, Universit√ɨ de Sherbrooke;
University Children's Hospital Tuebingen; Pontificia Universidad
Catolica de Chile; Tel Aviv University; the University of Ottawa; the
University of Freiburg and the University of Oxford.

Simmaron Research (Dr. Peterson)

New Website is up for our 4 to 1 fund raiser with ProHealth. it also has all the updates on our scientific research with preliminary reports: check out

Notice it is dot-com now. The old website domain name server will update in a couple days.