Friday, October 12, 2012

Ribose for CFS/FM on Ricki Lake October 22

Although I have issues with some of Dr. T's recommendations, I have heard first-hand success stories about ribose.
 
 
[The following information is provided by Jacob Teitelbaum, MD, Medical
Director of the Fibromyalgia & Fatigue Centers, Inc.]

DR. TEITELBAUM DISCUSSES RIBOSE FOR CFS/FMS ON RICKI LAKE SHOW

In the October 22 episode of the nationally televised Ricki Lake show, Dr.
Jacob Teitelbaum discusses his recently published study using ribose in
fibromyalgia and chronic fatigue syndrome. In the study, 257 people with
fibromyalgia, at 53 health centers, showed an average 61% increase in energy
and a marked overall improvement in quality of life by taking 5 grams of
ribose three times a day for three weeks. In addition, he discusses his
SHINE Protocol, which in another published study, also dramatically
decreased pain and improved quality of life in people with chronic fatigue
syndrome and fibromyalgia. Please pass this information along to your
friends and support groups.

The show episode begins airing Monday, October 22. To find out the time and
channel in your area, visit http://therickilakeshow.com and click on "where
to watch" in the upper right-hand corner of the page. R

Monday, October 8, 2012

Check out Are we throwing away 'expired' medications too soon? - CNN.com

OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”

OUR FAVORITE DRUG (HOPE), AND TIME TO SAY "AUF WIEDERSEHEN", October 8,
2012, by XMRV Global Action

"Suffice it to say that the XGA team has reached a turning point, and we
wanted to exit with a positive statement about hope. This is not a
capitulation, rather an opportune time for us individually to focus on our
health and our respective advocacy initiatives. October 8th seemed like an
apropos day to close shop, and to pass the torch on to other forums. We
hope that the tone and content of this letter conveys our feeling of
continuing and irrepressible optimism about research and treatment
prospects for neuro-immune diseases and for M.E. Even with XMRV's demise,
we have moved substantially forward. And each of us is continuing to work
in the background on our own personal
advocacy initiatives."

https://docs.google.com/open?id=0B5WMbsUn0T0TZDJGU2x0NTlnZHM
* * *
Thanks to XGA for all their efforts.
 
 

Sunday, October 7, 2012

Clinical Exercise Testing in CFS/ME Research and Treatment

~~~~~~~~~~~~~~~~~~~~~~~~~
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>>>>> Help ME Circle <<<<
>>>> 7 October 2012 <<<<
Editorship : j.van.roijen@chello.nl
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With thanks to Tom Kindlon

http://bit.ly/R5iTLt

a Path Through the Valley

Clinical exercise testing in
CFS/ME research and treatment

Posted on October 4, 2012 by Lydia


This is a summary of the (rather long) lecture from
the CFIDS conference in Sweden this week;
"Clinical exercise testing in CFS/ME research and
treatment" (http://bit.ly/R5iZTi).

I have omitted a lot of the discussion on the
advantages/disadvantages of various scientific
methods etc. and stuck mainly to the items that I
would assume a non-scientific interested person
would wish to know.

If you're of a scientific bent, you would probably get
more benefit from watching the actual lecture. All
credit to Professor Christopher R Snell of the Pacific
Fatigue Laboratory, California (USA).

If you're a sufferer, I recommend watching from
54:00 through to 59:20 – they go through a brief
summary of energy conserving techniques, which
could be very useful! Following this there is a case
study of how they applied some of these
techniques to a 17 year old sufferer to allow her to
manage the condition better.

http://bit.ly/R5iZTi

Clinical exercise testing in CFS/ME
research and treatment: A summary

On an exercise test where a person has to exercise
until they are exhausted, a healthy person will
recover usually within a day, definitely within 48
hours (on the outside).

When they did this with CFS patients, they had only
one person recover within 48 hours – the average
recovery was 4 days.

CFS patients also had symptom flares as a result of
this test.`

``````
There are problems with the PACE trial:

* they very selectively reported results

* they only took high-functioning CFS patients

* they used the 6-minute walking test (see below)

* patients at the end of the trial, were still walking
at a severely disabled speed, even when they had
improved the distance they could walk. If a patient
who needed a heart transplant could only walk this
speed due to a lung problem, they would not be
allowed onto the transplant list because they
would not be deemed well enough to actually
survive.


* there is no mention of any improved functioning
in any other area for any of the trial participants


There are problems with the 6-minute
walking test (as used in the PACE trial
as a measure of functioning) and other
similar tests

* they assume that the patient does not exercise
to exhaustion, or anywhere near exhaustion. All
the understanding of the results are based on the
assumption that it was just a casual exercise
experience that they could easily repeat.

* it does not work for specific groups of unhealthy
people, it is designed only for a healthy population,
so results from an unhealthy group can't be
interpreted validly. This is because they rely on
the heart rate as a measure of energy production,
but the way the heart rate and energy production
are linked in a healthy person is not necessarily the
same in a sick person. Many studies in fact show
that the link between them in certain diseases is
very different – meaning you cannot rely on these
tests in sick individuals, without first carrying out
studies to determine what the connection is.

* the american heart association says not to use
tests with heart-rate measures, as many people
use heart-rate controlling medication (eg: for
POTS, migraines)

The best way to assess physical
function is to use

"cardio-pulmonary exercise testing", which is to
measure:

* oxygen consumption (as oxygen is used directly
to produce energy, this will always be a correct
measure). This is effected by lungs, heart and
muscles.

* the "anaerobic threshold" – which is the point at
which the carbon dioxide you breathe out is
greater than the oxygen you take in. In a healthy
person this is 50-60% of max. oxygen
consumption; in an athlete it may be as high as
90%. In CFS patients it is very very low, and going
above it makes you worse – and is very easy to do

* you can prove beyond doubt that someone is not
faking these results because you are measuring
the amounts of oxygen and carbon dioxide in the
air they breathe in and out.

* you can establish beyond doubt that the persons
capabilities in the test have nothing to do with
motivation/effort because the "effort" of the
person is shown in the oxygen intake/carbon
dioxide given out

* these are a good measure of function, they are
very reliable and accurate

* there are alreasy established measures of this for
many other healthy people and disease states,
meaning you can compare ME patients to others
easily


Exercise will not cure ME/CFS. But – people who
do not exercise will suffer the effects of a
sedentary lifestyle, so if you can do some
exercise without making symptoms worse, it is
probably beneficial to do so

Post exertional malaise occurs across all the
spectrum of ME/CFS patients – regardless of how
severe they are

It does not show up in an single exercise test – you
need to test again (they do it 24 hours later). This
allows them to measure the post-exertional effect.
(Many ME/CFS patients could be assessed as
normal on a single test, due to eg: having rested
beforehand, it is the second test which shows they
are ill)

It is hard to separate the effects of deconditioning
from the effects of CFS with a single test

* but with multiple tests you can see what CFS has
done.

At 37 minutes there is a table of results for ME
patients


The second test shows:

* ME/CFS patients do worse on the second test;
they are significantly worse (in terms both of
workload they accomplish, and the
oxygen/anaerobic measures)

* non-ME/CFS patient will improve on the second
test (graph at 42mins).

* ME/CFS patients have a drop in the oxygen
consumption, but a much much worse drop in the
amount of work actually achieved. This shows that
the exercise on the second test is less effcient

* the drop in peak-oxygen consumption is actually
less for severe patients than for milder patients;
but severe patients start out with a much lower
oxygen consumption than a milder patient.

* the drop in workload done is more in severe
patients than milder patients

* The theory is that there is a basic level of oxygen
consumption that you need to survive, and the
more severe you are the closer you are to this
base level. So severe patients cannot drop any
lower or they would die, so they reduce workload
instead.

This is a reproducable, reliable test which shows the
extent of the post-exertional malaise; other
research groups have replicated these results

Their tests show objectively for CFS patients:

* an atypical recovery

* an abnormal stress-test

* post exertional malaise

There are many theories as to why post-exertional
malaise occurs

Their research shows ME/CFS patients

* have a reduced physical working capability

* the aerobic energy generation (the production of
energy in the presence of oxygen) is impaired

* activity exacerbates symptoms ( every ME/CFS
patient has post exertional malaise)


Their research can be used as an objective
proof of disability (for example, for disability
assessments and clinical trials)

It is quantifiable – ie: it can measure accurately to
a degree how ill the patient is

It reveals abnormality across many systems


Cognitive behavioural therapy is not a cure for
ME/CFS – but it can be useful to help patients
manage/adjust to their illness

ME patients can go a very long way into the
anaerobic threshold (longer than most people
manage) because they have adjusted to being ill;

but this results in huge PEM. So short-term,
patients can often manage a lot more than they
can manage long-term.


Avoiding activities above the anaerobic
threshold will help patients avoid PEM

* heart rate monitors can help; they are set to go
off just before you hit the anaerobic threshold, to
get you to rest instead of using too much energy

* activity logs can help; you can identify activities
which make you worse (what activities make you
ill? How do you feel the next day? Do you get PEM?
Can you carry out other normal activities and
these activities?)

* "rates of perceived exertion" can help; this is a
fancy way of saying, if it feels like a lot of effort, it
is a lot of effort – stop!


Resting will help recovery from going into the
anaerobic threshold

If you go above the anaerobic threshold, you will
have to pay back far more energy


Physiotherapy can help – but physios often need to
be re-trained to understand ME/CFS

* reconditioning will not work with ME/CFS patients


They have a therapy called "energy
conservation therapy" – I think this is basically
working out how to manage your life now with
less energy. It involves

* pacing

* body positioning (ie: sit instead of stand to use
less energy)

* protecting joints

* using assistive devices

* planning activities (to make sure you don't
over-exert)

* using any energy saving thing you can do etc.


They also have a "theraputic exercise program"
(nothing like GET!) – this can be aided by
trained physios

* learning to breathe properly

* training the anaerobic system, not the aerobic
system

* exercise must be recovered from within 24 hours
– if you take longer than that to recover, it is
harming you, not helping

* stretching

* only doing a little bit at a time

* only ever increase amounts if you aren't
experiencing symptom increase – decrease
amounts if you experience symptoms


He closed with the comment:

"It doesn't really matter what you call it, there
are hundreds and thousands of people who are
really really sick; if the medical profession is
not helping them, their government
representatives are not helping them; they
need help urgently."







Secret Files reveal Research Funding Refused

Source: VacTruth
Date: October 6, 2012
Author: Christina England
URL: http://vactruth.com/2012/10/06/chronic-fatigue-syndrome-vaccinations/
Ref: Files:
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Secret papers reveal funding refused to researchers looking into link
between Chronic Fatigue Syndrome and vaccinations
---------------------------------------------------------------------

Secret papers hidden in archives for years clearly show that when
medical researchers applied for funding to study the link between
vaccinations and the debilitating condition known as ME/CFS in more
detail, their applications were turned down in favor of psychiatric
research, which was said to be preferable.

For many years, researchers and medical professionals have suspected
that there could be a link between vaccinations and ME/CFS. This has
been difficult to prove because much of the evidence supporting the
ME/CFS/vaccination link has either been suppressed or ignored for a
variety of reasons. Before exposing secret documents that have been
hidden from the public view since the 1990's, I will explain what is
meant by the term ME/CFS.


WHAT IS ME? WHAT IS CFS?

(...)


THE DIRTY NOT-SO-LITTLE SECRET

According to paperwork supplied to me by an interested party, grants
have been denied to researchers studying a possible link between
vaccinations and ME/CFS. The documents were only discovered when they
became the subject of a Freedom of Information request. (It is
interesting to note that every document carries a stamp saying 'closed
until 2071.')

In 1992, Doris Jones, a postgraduate medical research student, applied
for funding from the Medical Research Centre (MRC) to research what
she believed to be the link between vaccinations, antibiotics and the
subsequent development of ME/CFS. On May 25, 1992, Jones wrote a
letter to Dr. Peter Dukes of the MRC, stating how a Ciba (Ciba Geigy
Corporation, a Swiss pharmaceutical company now owned by Novartis)
open meeting that she attended had been a unique experience for her.
She explained that although she did not belong to the medical
profession and was not affiliated with any patient organizations, she
was studying the subject of ME/CFS for her postgraduate degree.

She described how shocked she was that there had been what she
described as 'a huge chasm between how the illness was perceived by
general practitioners and psychiatrists compared to how it affects
sufferers in real life and what its true nature may turn out to be.'
Ms. Jones described in depth a comprehensive, multifactorial,
epidemiological research project that she had recently completed on
ME/CFS.
Enclosing the abstract for Dr. Dukes to read, she wrote: 'You
will note that details on associated factors like vaccinations,
antibiotics and allergies may be especially relevant, as may those on
diet, stress and earlier infections. It is disconcerting that some of
these associated factors can also be seen in certain apparently
healthy subjects, notably in normal students, which seems to coincide
with concurrent emergence of similar symptomatology.'

She backed up her theories with references to other published
research, in particular the work of Professor Behan. She enclosed one
of his papers for Dukes to read. She wrote: 'Indeed one of Professor Behan's teams recently identified sequences of an enterovirus which were identical to the polio vaccine virus in a proportion of carefully
selected PVPS patients.' Jones offered various other examples of
carefully researched material to support her claims, mentioning
various vaccinations and antibiotics as possible triggers to ME/CFS.
Although Jones appeared to supply the MRC with sufficient documented
evidence for funding to be granted, she was turned down in favor of
other research projects that supplied less evidence to support their
application.

At the time of her application, ME/CFS was being portrayed as a
psychiatric disorder and Jones wished to dispel this myth, proving
that ME/CFS was in fact a physical disorder caused by vaccinations, in
particular the tetanus vaccination and/or antibiotics.


UNNECESSARY HUMAN SUFFERING

It is interesting to note that Ms. Jones may have hit the nail well
and truly on the head as to why she was refused funding, when she
innocently wrote: 'You may agree that in the circumstances an in depth
large-scale epidemiological research project into the disorder would
seem advisable. Whilst possible consequences for the pharmaceutical
industry need to be considered of course, these surely should be
offset against not only an incalculable amount of perhaps unnecessary
human suffering, but also against what may be a rapidly growing number
of middle-aged or even quite young incapacitated, perhaps permanently
disabled and STATE BENEFIT Dependent subjects!' (emphasis added)

The documents demonstrate evidence of how various discussions between
Ms. Jones and the MRC grew quite heated, especially when it appears
the MRC did not seem the slightest bit interested in supporting
Jones's application, advising her instead to apply to a charity for
funding! Was it because research into vaccinations and antibiotics is
financially beneficial to the pharmaceutical industry and therefore,
not a viable option for research? It certainly appears that way when
reading the supplied document.

On December 22, 1992, the MRC wrote to Jones, seemingly rebutting her
suggestion that it was because she was studying vaccinations as a
trigger for ME/CFS that they were refusing her application. They
claimed that it was more to do with the fact that she was not
'competitive,' stating: 'You suggest that there may be a link between
vaccinations and ME. The sequelae of immunisation in general is of an
area in which the Health Departments in particular have a special
interest. The problem is to establish the specificity of that link to
CFS. I can however assure you that the MRC is certainly not reluctant
to support research or any other area that may be related to CFS, as
long as it is competitive.' (emphasis added)


PLAYING FAVORITES

It appears from reading the documentation that instead of researching
a wide range of possible causes, the MRC continually favored research
undertaken by the Institute of Psychiatry, stating this fact in at
least three documents.

On March 24, 1992, Dukes wrote to an unknown source (which, due to the
content, I believe to be Ms. Jones), stating: 'As you suggest, the
council does fund work on CFS at the Institute of Psychiatry, an
institution with a distinguished record of research spanning
disciplines such as neurology and neuropathology and not only
psychiatry. The project you may be referring to is entitled 'An
Epidemiological Approach to the Study of Chronic Fatigue Syndrome.'

It was later revealed that the MRC had given the Institute of
Psychiatry 91,000 pounds to fund research. In a 1995 letter to a Ms.
Heather White, Department of Health, they wrote: 'The investigators
planned to study the prevalence of CFS amongst consecutive general
practice attenders aged 18-45, together with exploration of associated
demographic, clinical and psychosocial variables. In addition, they
planned to identify patients suffering from prolonged fatigue
following viral infections and determine how many met a case
definition of CFS. We have not yet received a final report detailing
the findings of the study.

I should point out that we receive very few grant applications
concerning CFS and apart from the epidemiological study mentioned
above, none have been of sufficiently high scientific quality to merit
funding.' (emphasis added). Obviously researching vaccinations and
antibiotics as a possible trigger of ME/CFS was not scientific enough
to meet the 'high standards' required by the MRC. It is a real shame
that the MRC did not realize Doris Jones's true potential, as she went
on to gain a Master of Science degree and publish a selection of
papers on the subject. One of her papers titled 'ME and Vaccinations'
[4] was published in 1997 and read: 'Cases where ME subjects had been
vaccinated in the month before developing an infection and/or other
health problems which resulted in ME, attracted my particular
attention; in some instances there were no infections - an
immunization alone seemed to have triggered the onset of ME. There was
also a small group who informed me they had received long term
corticosteroid treatment for health problems before receiving a
vaccination which triggered their illness. Significantly perhaps,
adverse reactions to vaccines, drugs as well as sensitivities to
chemicals and foods were reported with almost predictable regularity.
Results of my study were first shown at the International Conference
on Chronic Fatigue Syndrome, Dublin, in 1994.'


CONCLUSION

By cherry picking their research preferences, the MRC has potentially
condemned many to suffer a life blighted by this tragic condition.
Instead of funding studies researching a variety of possible causes,
it appears the MRC only choose to fund the 'it's all in the head'
theories drummed up by psychiatrists only interested in lining their
own pockets.
It is a pity they have such a closed view when handing
out financial support. How can we ever learn more about this
debilitating disorder when research is being suppressed in this
appalling manor?


References

1. http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx
2. About.com Myalgic Encephalomyelitis/Encephalopathy (ME)
http://chronicfatigue.about.com/od/cfsglossary/g/MECFS.htm
3. http://www.meassociation.org.uk/?p=1001
4. Doris M. Jones MSc - ME and Vaccinations First Published by Yoga
and Health March 1997
http://www.investinme.org/InfoCentre-vaccines-popup-1.htm

--------
(c) 2012 VacTruth.com

Letter sent by Susanna Agardy to the Daily Telegraph

Letter sent by Susanna Agardy to the Daily Telegraph, in response to Dr.
Max Pemberton's article, "Why few dare tackle the psychology of ME" (
http://www.telegraph.co.uk/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html)



Max,

You claim that you would 'happily champion (the) cause' of ME patients but
you cannot because some of them have threatened you. Unfortunately your
sympathy does not come through in your writing, but your gloating and bias
do. It is unfortunate indeed that some people react by threatening you, but this is what happens when people are repeatedly needled and invalidated. It is you who started it all off by your sensationalist comments. Doctors who are sympathetic and respectful do not get attacked in this way.

You are then apparently content to offer your adverse experience as
tabloid-fodder, all the while sending out the message that ME should be
untouchable, thus continuing the provocation.

What is your purpose exactly?

Max, it is unreasonable to expect that repetition of the same behaviour
will elicit a different response. Have you considered changing your
behaviour? For example, you could start writing, in an accurate and
respectful way about the biomedical findings about ME. There are many, and
we have not seem them mentioned in the British press for a long time. They
demonstrate immune, neurological, cardiac endocrinological, digestive
system abnormalities as well as viral and other infections, for a start.
You could expect some scepticism at first, because you would need to live
down your reputation for hurling provocation, but after a while you would
no doubt get a different reaction. Or, as you suggest, you could just stop
writing about the topic.

Please do not drag the Cartesian legacy of the mind-body split into it. For
all practical purposes this is a bit of intellectual self-indulgence. It is
worse than useless for an ME patient who barely has the energy to put one
foot in front of the other. This idea is strongly associated with
invalidating the seriousness of the physical illness of ME and for
justifying psychiatric control over it. How useful is this to an AIDS
patient or someone with appendicitis to which this model must also apply?

You imply that the Lipkin findings mean that ME is not the result of a
biological agent-a point you seem anxious to prove. He said nothing of the
sort. He said '...ME/CFS could be reacting abnormally to normal levels of a
virus or a virus could kick off a chronic response and then completely
disappear -leaving a dysregulated system behind.' He added that ME/CFS is
not a psychosomatic disease. It is important to report him correctly.

Abnormal brain scans also do not mean that a patient necessarily has a
psychiatric condition a point you are anxious to push, any more than low
blood volume or abnormal immune responses illustrate that point. Please
examine your biases.

ME patients who manage to write to you do not do so because of a surfeit of energy. They will probably have to give up doing something else instead. They feel they need to correct misleading information being published about them, just as you anxious to put your own message out. I hope you will stop making the situation for ME worse.