Friday, September 9, 2011

Prevent Fibromyalgia With Sleep

And one more thing that's not on their list, DEMAND your doctor give you sleeping pills.  If he refuses, get a new doctor.  Preferably in another medical group.
When I finally saw a consultant doctor, who reviewed every word of my medical records, he asked what they'd given me for pain and/or sleep, because he didn't see any such prescriptions.  I said he didn't see them because none were ever written, despite repeated requests.  He looked shocked, "what would it have hurt to give you sleeping pills?"
The answer, it would've hurt the doctor's ego to admit that I was right and he was wrong about the diagnosis and proper treatment. 
As long as he was so invested in "post-divorce depression" he was never going to accept the reality that I was trapped in a cycle of pain preventing sleep and lack of sleep exacerbating pain.  I thought I could eventually convince him to give me the right pills after demonstrating that anti-depressants didn't help, but I was wrong.  Then I went to other doctors in the same medical group, who were more concerned with covering up their colleagues' malpractice than in getting me the proper treatment I needed.

Thursday, September 8, 2011



See Dr. Teitelbaum's blog on the Dr. Oz website where he discusses how
fibromyalgia often accompanies other autoimmune illnesses - and is often

Wishing Prof. Tony Pinching Well in Retirement!

Reproduced here with thanks and permission from
the reMEmber team, the now long established Sussex, SE-UK,
and well beyond, self-help, medical and political
campaigning support group, and pages 18-19 of their current September 2011 Journal.
"Farewell, from Professor Tony Pinching."
So it is now time, as I retire, to
bid you goodbye. By October, I
shall have stopped clinical and
academic work completely.
The Beatles sang about my
last birthday, so this is the
usual time for transition, and
being a clinical academic, I am
stopping after academic year
My career has been very
fulfilling, but also very
demanding - with far too little
time and energy for my
interests outside medicine and
academic life. I encourage
patients to look at work-life
balance, so I thought that I
should check it out myself! I
have definitely done the work,
but would like to do more "life"
whilst I am able.
Over the years, my work has
included: studies on how the
brain processes the sense of
smell (my first scientific paper
was published 42 years ago!);
studies on how myasthenia
gravis – a different condition of
weakness and fatiguability – is
caused through autoimmunity,
and how that changes the
approach to treatment;
understanding the nature and
treatment of systemic
vasculitis, in which there is
inflammation of blood vessels,
with widespread impact on
body functions; understanding,
diagnosing and treating
different sorts of immune
deficiency, congenital and
acquired, including that
induced by treatments;
responding to the emergence
of HIV and AIDS, as a new
and very challenging immune
deficiency, from the earliest
years, clinically and
scientifically, but also in public
policy and public
understanding; and, of course,
clinical, scientific and policy
work on CFS/ME.
These last two areas have been the main
focus of my career for nearly
thirty years.
As a clinician and scientist, it
has been an extraordinarily full
and enriching career. I have
learnt a lot about people, and
about how things work (or
don't!). There remain many
frustrations about what we still
don't know or can't do. But I
have tried to remain pragmatic
and work with what we do
know and can do, whilst trying
to extend the boundaries.
As a clinical scientist, I have always
been nurtured, informed and
inspired by my patients and
what they tell me. I have tried
to do my best to help, but I
have been keenly aware in
many respects how little that is
for people facing the adversity
of disease and its effect on
their lives. I am sorry that I will
at times have fallen well short
of people's reasonable
expectations. But for some, I
hope that I have been a useful
"mountain guide" through the
treacherous terrain of illness.
What will I miss? Above all, I
shall miss my patients and the
opportunity to work with them
on their life's journey, helping
them to see how they can
make sense of themselves and
the world, as revealed by the
unwelcome intrusion of
I shall miss that sence
of extraordinary resilience
that people can show
in the face of adversity
and loss, gaining fresh
perspective and inner strength,
whilst they make progress in
whatever way is feasible, often
supported by very special
family or friends as carers.
I shall miss many fine
colleagues, whose guidance
and support, professionally
and personally, have made my
work more effective and
satisfying, not least because
they are able to do many things
that I can't do.
I shall also miss the many individuals
and organisations - such as Janice
Kent and reMEmber – who
make such a difference in
supporting people affected by
disease, whether as patients,
carers, family or friends.

Above all, I shall miss the whole
challenge of clinical medicine,
professionally and personally -
most especially the privilege and
responsibility of getting to know
and care for someone at a most
difficult time in their lives.
What won't I miss?! Sadly, some
of the social responses to illness
and those affected – evident
with both CFS/ME and
HIV/AIDS – show some of the
less appealing characteristics of
humankind: wilful ignorance,
prejudice, stigma, neglect and
blame still add to the personal
burden of disease, as if that
wasn't enough in itself.
I also shall definitely not miss
the conflicts of the ME field -
often bitter, misjudged and
personalised. Whilst I do
understand something of why
this terrible civil war is still being
waged, I am profoundly
disappointed by the inability or
unwillingness of some of the key
protagonists to move on. Some
seem locked into disputes that
are about past hurts and
I have seen at first hand how one's views
and statements can be deliberately
I will definitely not miss having
to deal with the benefits system, I see visited
upon the ill and disabled. The systems
and some of the people who
work in them have lost sight of
why they are there – to help
support those people in society
who are vulnerable through
Sadly, as a result of
political and media rhetoric, and
misapplications of poorly
thought through processes,
everyone seems to be regarded
as if they are trying to cheat the
system. Self-evidently
erroneous (eg judging by
success at appeal) and often
perverse decisions - about DLA
and especially ESA - are being
made, in which the accounts by
the patient, their carers and
clinicians are being ignored in
favour of superficial, brief and
formulaic "medical" assessments
that seem determined to
ignore the everyday realities that
patients know.
These cause unnecessary upset, exacerbate
the improverishing effect of
illness, and often cause health
So what am I going to do with
my time and energy now?
I plan to spend more time on music –
playing (clarinet) and listening –
and looking at ways in which
music can enrich our lives,
including continuing support for
music therapy and starting some
new projects with professional
Having enjoyed working with a theatre company
- Theatrescience (including
plays on HIV/AIDS, CFS/ME
and dementia), I shall continue
to offer my guidance while it has
any utility. I want to read more
and do some more creative
writing. I shall enjoy pottering in
the garden and getting it into
better order! I would like to
travel too, as there are important
places still to see.
My children have all grown up
into very interesting people,
whom I want to be with some
more, as well as three young
grandchildren and wider family.
I do also wish to reflect on my
extraordinarily diverse career
and experiences, and see if
there is something new to say,
and write, about medicine and
about being a doctor.
I will still be a doctor, I just
won't be doing doctoring!
I often remind patients that "we are human
beings, not human doings!" – we
can still be ourselves, even if the
way we act may have to change
as a result of changed
As I bid you farewell, I am very
conscious of the beautiful and
heart-wrenching Farewell that
Wotan sings to his favourite
daughter Brunnhilde at the end
of Wagner's Die Walkure (The
Valkyries), which I heard a few
days ago at the St Endellion
Festival. This might not be your
cup of tea, but just imagine! It is
full of profound love and pain, as
well as regret about how some
things came to be. As he is
obliged to leave her on a rocky
mountain-top, he surrounds her
with a ring of fire - to protect her
until the arrival of a true hero,
who will rescue her.
So I say a fond farewell to you
all, at least in a similar spirit,
wishing that you and everyone
affected by CFS/ME be
surrounded by a metaphorical
ring of fire that can protect you,
until someone or something
arrives to free you from the
rocky place where you find

* * *
A reminder -- the first generation of us are approaching 30 years in the field, i.e., retirement age.  We're going to see a lot more of these, and a lot more obituaries, and can only hope that the younger generation will continue to step up to the plate to pick up where we left off.

Wednesday, September 7, 2011

(Part 1) Tips for treating CFS/FMS when all else fails

[The following information is provided by Jacob Teitelbaum, MD, Medical
Director of the Fibromyalgia & Fatigue Centers, Inc.  This is part 1 of a
3-part article written by Dr. Teitelbaum that he is releasing through his
newsletter and blogs. Parts 2 and 3 will be released in the next 2 weeks.]


When giving lectures, I'm sometimes approached by people who say they've
tried everything for their CFS or fibromyalgia - but nothing helps. In most
cases, I ask them if they've even tried the basic treatments in the SHINE
protocol (such as the sleep medication Ambien, the adrenal hormone Cortef,
the anti-fungals Diflucan and Anti-Yeast, and the thyroid supplements Armour
or BMR Complex). Their answer is usually no.

Occasionally though, the person is still ill even having done SHINE. Though
our published research shows that over 85% of CFS and fibromyalgia patients
feel significantly better after just 3 months on SHINE, that's not good
enough - Our goal is 100% relief!

In this series I discuss 30 treatments that can be very helpful in stubborn
CFS/FM cases, and I explain an overall approach to using them. I group the
30 treatments by categories, in the order in which they should be
considered. Each part in the series will cover 10 of these special

You should begin with the basics by getting started on the core SHINE
protocol. If you haven't already done so, do the free Symptom and Lab
Analysis Program
( This will
create an individual SHINE treatment protocol customized to you, based on
your symptoms, and if available, the pertinent lab tests.

The basic treatments, along with SHINE, will help most of you get your life
back. But if you're having trouble getting better, or you're better but not
better enough - read on to learn what to do next!


Part 1 includes the first 10 of 30 treatments to try "when all else fails" -
and a lot of these focus on sleep.

For easier readability, I show an asterisk (*) next to the treatments that
are self-care/non-prescription. The other treatments require that you work
with your doctor. (Note that some of the asterisk treatments are actually a
mix of self-care and medical care.) At the end of this section, you'll find
a list of which treatments require a blood test (a convenient summary in
case you want to do all these tests at one time).


Start by trying the following four treatments. If they fail to work, move on
to the numbered steps below:

* Herbal mixes

* Medications Ambien, trazodone and/or Neurontin

* Low dose melatonin (.5-1 mg)

* And a drop of lavender oil on your upper lip at bedtime

*1. Be sure you are sleeping eight hours a night.

If not, read my article Sleep and Insomnia
If you've found that sleep medications aren't working for you, download the
SHINE Protocol document
( and review
treatment numbers 22 through 46a for a partial list of natural and
prescription sleep aids that can help with fibromyalgia. Most people
discover that there are many helpful sleep treatments that they've not tried

*2. Do sleep medications initially work for a few days or weeks, and then
stop working?

If so, rotate them. For example, if each medication works for only two
weeks, then take it (or a mix of a few treatments) for 10 days and then go
on to the next medication. When you are on the last medication that works,
go back to the first one(s). You'll usually find that it is effective again!
Another advantage of using herbal sleep aids is that it's uncommon to
develop a tolerance to them.

*3. Are you exhausted all day but wide awake at bedtime?

It's likely that your adrenal glands are under-functioning during the day -
leaving you tired - but that your levels of the adrenal hormone cortisol are
too high at bedtime - causing you to be wide awake. This is called a
"blunted circadian rhythm." If this sounds like you, try the herbal mix
Sleep Tonight (from Enzymatic Therapy). This product brings down an elevated
bedtime cortisol level, and often helps you sleep within the first few
nights of use (and sometimes the very first night). You can take it along
with other sleep herbals and medications. If after a few weeks of this herb
working you start waking in the middle of the night, lower the dose or take
a 1-2 ounce high-protein bedtime snack (see number 4 below) - Sleep Tonight
will have been lowering your cortisol too much.

*4. Do you wake up too early in the morning (between 2 and 4 am)?

This is very common in CFS and fibromyalgia, and has many possible causes.
One that is common and simple to treat is low blood sugar levels during the
middle of the night. (It's not uncommon to see cortisol levels that are too
high at bedtime become too low in the middle of the night, with a
corresponding drop in blood sugar. See "*3" above.) The simple solution is
to eat a 1-2-ounce high-protein snack at bedtime (cheese, an egg, some
nuts). This will help maintain stable blood sugar during sleep. If nighttime
low blood sugar is your problem, the snack will help the very first night.
Also, acid reflux may wake you at night. Take an acid blocker at bedtime 1-2
nights and see if this helps. If it does, don't stay on the acid blocker
(which is addictive). Instead, send me a message on my Facebook page
( and I'll give you the solution (and
stay tuned for an article on this in an upcoming newsletter).

*5. Undergo a sleep study to rule out sleep apnea, restless legs syndrome or
UARS (Upper Airway Resistance Syndrome) - or videotape yourself!

Here's a quick, do-it-yourself screening. Videotape yourself sleeping at
night, putting the camera at the foot of the bed so you can see both your
legs and your face. If your legs are jumping a lot during sleep, ask your
doctor to treat you for restless legs syndrome (RLS). The best treatment for
RLS is to take an iron supplement until your ferritin blood level is more
than 60. The medication Neurontin can also help. If the video shows that you
snore and stop breathing during the night, ask your physician to do a "split
sleep study" to look for sleep apnea. In a split study, your physician looks
for apnea the first part of the night. If it's present, they try CPAP
treatment (Continuous Positive Airway Pressure, using a breathing mask)
during the second part of the night. If you don't ask for a split study, the
sleep lab will usually conduct the tests over two nights, which will cost
you double!


*6. The Methylation Protocol.

This protocol, developed by Drs. Amy Yasko and Rich Van Konynenburg, and
researched by Dr. Neil Nathan, addresses methylation defects. (Methylation
is a biochemical reaction necessary for the building and repair of every
cell.) The protocol can be very helpful in a subset of CFS patients who
don't improve with standard treatment. For more information on the Protocol,
see Dr. Nathan's article at the ProHealth website
I have great respect for Dr. Van Konynenburg and Dr. Nathan - they are
definitely on the side of angels!

7. Check for celiac disease, with two blood tests: anti-transglutaminase IgA
and IgG antibody.

If your test is positive, you'll probably improve dramatically by avoiding
gluten, a protein found in wheat. (Important: you must not be on a
wheat-free diet before the test.) To learn more about celiac disease, see

8. Check for serum ammonia level.

If it's elevated, ask your doctor to treat for bacterial bowel infections.
Elevated ammonia from bowel infections may also aggravate brain fog. (We
talk more about these bowel infections in Part 3 of this series). Also,
consider a trial of lactulose, a prescription laxative that binds ammonia.

9. Try low-dose naltrexone.

This safe, simple and low-cost medication (an old standard in treating
alcohol and drug addiction) can boost immune function and decrease pain in
fibromyalgia. More is not better, as it loses effectiveness if you take more
than 4.5 mg a day. Generally, I give 3.5 to 4.5 mg at bedtime. I order it by
prescription from a compounding pharmacy (ITC Pharmacy, at 888-349-5453).
Your physician can call it in, and the pharmacy can guide your physician in
how to prescribe the medicine. An important point is that you need to give
it at least two months to work. For more information (and you should read
this before starting), visit the website Low Dose Naltrexone

10. Heparin.

About 50% of people who don't respond to any other treatment improve
dramatically with 7,000 to 8,000 units of heparin, a blood thinner. I give a
subcutaneous injection, twice a day. The benefits are usually seen within 3
to 6 weeks. Unfortunately, this treatment has some risks, such as bleeding,
and even a potentially fatal drop in platelet counts. However, I've never
seen or heard of either of these toxicities occurring when heparin is used
for CFS. I often save this for when all others fail, because of the risk.


There are a number of blood tests used in the treatments discussed in this
three-part series. They are summarized below for your convenience:

* Ferritin (treatment no. 3)

* Anti-transglutaminase IgA and IgG antibody (treatment no. 7)

* Serum ammonia level (treatment no. 8)

* Fasting morning cortisol; DHEA-S (treatment no. 12)

* Pregnenolone (treatment no. 13)

* IGF-1 (treatment no. 14)

* Free and total testosterone (treatment no. 16)

Part 2 will be posted on September 14.

Dr. John Greensmith on ICC


The M.E. Community welcomes the International Consensus
Criteria (ICC) for M.E. (Myalgic Encephalomyelitis), compiled by 26
acknowledged authorities from all parts of the world, from which none is
immune from this dreadfully disabling neurological illness (Myalgic
Encephalomyelitis: International Consensus Criteria, Carruthers et al.,
Journal of Internal Medicine, 22 August 2011 --  Short link:

It not only renders obsolete all previous criteria but calls into
question the trustworthiness of conclusions drawn from the whole
catalogue of research, using the heterogeneous CFS or hybrid CFS/ME,
because of its doubtful validity and reliability  but it also sets a new
benchmark for future research.

We also welcome the pioneering initiative of the Charity Invest in ME to
establish a specialist centre of excellence for diagnosis, research and
treatment in the UK (A new era in ME/CFS research - short link: to be financed by independently (Let's do it
for ME! - Short link: and conducted by
academics free of any conflicting interests.

On an immediate practical level, it challenges the wisdom of giving
treatments recommended by the NICE guidelines of 2007, to people with
M.E. defined by these more discriminatory criteria. We, therefore, call
upon GPs not to refer and clinics to voluntarily suspend treatments,
pending further research, on scientific and ethical grounds. There is
also some relief, since the ICC make it highly unlikely that M.E.
sufferers could have been the same people about whom Professor Simon
Wessely was making unpleasant allegations because they would be too ill
to do so, or take his treatment.

Just as the ICC has displaced previous criteria, it must, itself, be
prepared to be modified and replaced by any even more robust and
discriminatory criteria that would provide a more refined or pure sample
of people with M.E. free of as many possible contaminating variables.

The M.E. Community seeks the exclusion of "fatigue" - which
even its advocates describe as "heterogeneous", "ubiquitous" and
"nebulous" - along with its bookends "Chronic" and "Syndrome" as another
known step towards purity of sample to be tested. This would allow us to
identify any obvious similarities and suggest lines of biomedical
research to be pursued, in advance of recommending any treatments at
all. Whether the old guard CFS researchers take the opportunity
themselves, we must test the claims for their treatments with the new,
refined M.E. subjects, in order to verify that they are a discrete
group. Only then should any treatments be suggested.

To be clear about direction of research and degree of purity of samples
to be studied, we call upon every patient representative group, whether
at international, national or local level, having only M.E. in their
name (as opposed to some hybrid or alternative, for example, ME/CFS,
PVFS, CFIDS etc.) to either: adopt the ICC and remove the fatigue
element or clearly re-name itself, in order that M.E. sufferers may
decide whether to affiliate or not.

Since we cannot understand why anyone would choose muddier brown waters
when a clearer blue sea is available, we are committed to these
principles and have greater aspirations and a higher morale than only a
month ago of positive steps towards more reliable research in the hope
of a cure or significant recovery for this awful illness.

Yours sincerely
Dr John H Greensmith
ME Community

Tuesday, September 6, 2011

Advances in Virology is publishing a 'Special Issue' about XMRV

People are reporting difficulty accessing the website ... maybe there are enough of us trying that it's crashed?  So, here's the most-recent Co-Cure post that contains some of the info.
Note: Advances in Virology is publishing a 'Special Issue' about XMRV.
It appears that all of the papers included in this special issue have
been previously published and most of the XMRV-specific ones were
posted to Co-Cure upon initial publication. The full list with links
is included below this accompanying editorial.


Xenotropic and Other Murine Leukemia Virus-Related Viruses in Humans
Arifa S. Khan, Myra McClure, Yoshinao Kubo, Paul Jolicoeur

The recent discovery of a xenotropic murine leukemia virus-related
retrovirus (designated as XMRV) in prostrate cancer tissues and later
in chronic fatigue syndrome patients created excitement related to
possible association of a virus with these human diseases. However,
the failure to reproduce such results in other laboratories raised
concerns and much debate among scientists, patient populations and
clinicians over the original findings. This Special Issue is a
collection of recent research reports, which address this controversy
and also includes several expert reviews on various aspects of murine
retroviruses, such as virus biology, replication, phylogeny, and
pathogenesis, as well as XMRV in prostrate cancer.

The first paper by A. Rein reviews the murine retrovirus genomic
structure, viral structural proteins, and virus replication. The
second paper by C. Kozak provides a detailed review of murine
retrovirus entry into the cell and different receptor usage by
different types of murine retroviruses and with comparison to XMRV.
The third paper by J. Blomberg et al., discusses the phylogenetic
analysis of murine retroviruses and other retroviruses. The fourth
paper by J. Chakraborty discusses murine retrovirus pathogenesis and a
mouse model for transmission of lymphoma by breast milk, respectively.
The fifth paper by D. Kang et al., reviews the discovery, progress and
current status of XMRV findings in prostate cancer patients. The sixth
paper by S. Tang and I.K. Hewlett reviews XMRV detection assays and
deficiencies in the testing methods. The seventh paper by J.M. Coffin
and O. Cingöz provides a detailed review of the controversies related
to the XMRV results in human clinical samples and the findings
regarding virus origin and discusses the potential sources of
contamination that resulted in the misidentification of the virus as a
novel human retrovirus.

Additionally, the Special Issues contains various research papers
demonstrating the absence of XMRV in various patient populations using
sensitive assays for virus detection. The eighth paper by B. Oakes et
al., reports the absence of antibodies in CFS patients and healthy
controls using two novel sensitive immunoassays. The ninth paper by J.
Spindler et al., reports the lack of evidence of XMRV infection in
HIV-1 infected men or men at high risk for HIV-1 infection by
analyzing PBMCs and plasma samples using sensitive PCR assays and
immunoassays.The tenth paper by K. Delviks-Frankenberry et al.,
demonstrates the absence of XMRV in PBMCs and plasma from HIV-1
lymphoma patients using PCR or immunoassays. The eleventh paper by
M.J. Robinson et al., indicates the absence of XMRV sequences in
prostrate cancer samples from diverse populations, B cell lymphoma
patients, as well as UK blood donors. The twelfth paper by M. Kearney
et al., reports the use of different methodologies to demonstrate the
absence of XMRV in plasma and in some tissue samples from prostate
cancer patients. The final, thirteenth paper by P. Sharma et al.,
describes XMRV infection in in the reproductive tissues of rhesus
monkeys, indicating the possibility of an animal model for further
investigations of virus transmission.

This Special Issue provides the current thinking and recent research
results of studies on XMRV and other murine leukemia
retrovirus-related sequences in humans. At this point, a consensus
appears to be emerging that XMRV footprints or infectious XMRV
detected in normal human individuals or in some diseased patients
represent laboratory contaminations. Indeed, numerous studies have now
failed to confirm the presence of XMRV in humans and XMRV has recently
been found to be a laboratory-derived rare recombinant, which
originated during serial passages of a patient's prostate cancer cells
in nude mice. The information provided in this issue should be of
interest to a broad audience including scientists, clinicians, patient
populations, and public health agencies.

Arifa S. Khan
Myra McClure
Yoshinao Kubo
Paul Jolicoeur


Xenotropic and Other Murine Leukemia Virus-Related Viruses in Humans
Advances in Virology

1. Alan Rein - Review Article- Murine Leukemia Viruses: Biology and Replication

2. C. Kozak - Review Article- Naturally occurring polymorphisms of the
mouse gammaretrovirus receptors CAT-1 and XPR1 alter virus tropism and

3. J. Blomberg et al. - Review Article- Phylogeny-directed search for
murine leukemia virus - like retroviruses in vertebrate genomes, and
in patients suffering from Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome and Prostate Cancer.

4. J. Chakraborty - Review Article- MoMuLV-ts-1: A Unique Mouse Model
of Retrovirus-Induced Lymphoma Transmitted by Breast Milk

5. D. Kang et al. - Review Article- XMRV Discovery and Prostate
Cancer-Related Research

6. S. Tang and I.K. Hewlett - Review Article- Testing Strategies for
Detection of Xenotropic Murine Leukemia Virus-Related Virus Infection

7. J.M. Coffin and O. Cingöz - Review Article- Endogenous Murine
Leukemia Viruses: Relationship to XMRV and MLVs Detected in Human DNA

8. B. Oakes et al. - Failure to detect XMRV-specific antibodies in the
plasma of CFS patients using Highly Sensitive Chemiluminescence

9. J. Spindler et al. - Prevalence of XMRV Nucleic Acid and Antibody
in HIV-1 Infected Men and in Men at Risk for HIV-1 Infection

10. K. Delviks-Frankenberry et al. - Lack of Detection of Xenotropic
Murine Leukemia Virus-Related Virus in HIV-1 Lymphoma Patients

11. M.J. Robinson et al. - No Evidence of XMRV or MuLV Sequences in
Prostate Cancer, Diffuse Large B-Cell Lymphoma, or the UK Blood Donor

12. M. Kearney et al - Nucleic Acid, Antibody, and Virus Culture
Methods to Detect Xenotropic MLV-Related Virus (XMRV) in Macaque and
Human Blood Samples

13. P. Sharma et al. - Sexual transmission of XMRV:a potential infection route
* * *
Anyone notice how the misogynists are disputing the existence of XMRV in CFS (women) but not in prostate cancer (men)?
They're not denying that XMRV exists, only that it (not psychobabble) is implicated in CFS.  Mary Schweitzer (among others) has written on that subject -- how can patients have antibodies to lab contamination?!

Monday, September 5, 2011

Advances in Virology XMRV issue

The journal Advances in Virology has published a special issue with 13
articles about XMRV. The editorial introducing the issue is at
( . The studies in this issue have all been posted to the
online journal earlier this year.

Cinder Bridge: Evil deeds and common ground

"So here's my proposal.

"ME advocates will publicly oppose death threats, harassment, and abuse, as we have done from the beginning.

"In return, psychiatrists will publicly oppose the involuntary commitment of ME patients into psychiatric units.

What do you think, psychiatrists? Do we have a deal?"
* * *
Yeah, right.  Weasel's going to give up his cash cow in order to play Let's Make a Deal with the very patients he vilifies.

The Conundrum of CFS

Pretty good story on National Public Radio's Morning Edition  today (Sept 5).
The audio is a little bit different from what is printed at  this link.

Includes interviews with Dr Lucinda Bateman,  internist and Arthur Barsky, psychiatrist.  They have contrasting  views.

Integrative Medicine: Dietary deficiencies

Sunday, September 4, 2011

Jane Clout "On Wessely's summer spin."

Jane Clout "On Wessely's summer spin."
This is from a couple of posts I've made on Reddit.

Prof Wessely has been orchestrating a misinformation campaign around ME for
over a decade, through his control of the scientific explanations given to
the British media via his post at the Science Media Centre, his pivotal
position in the treatment available on the NHS to ME sufferers which
incidentally many blame for severe worsening of their illness, and his links with
the Medical Research Council who distribute public research funding.

Prof. Wessely and his collegues have obtained more than £8 million of
taxpayers money over the past seven years for their research into our "false
illness beliefs" (I quote him here) while biomedical research has gained
exactly nothing from that same source.

Oh, and his colleague Peter White is advisor to the DWP on ME, helping to
control the benefits payable (or not) to some very sick people.

The scientists who work to find the truth about ME are often showered with
praise, groupcards of thankyous, donations etc.

What we are doing is fighting for real effective science, hoping that that
might lead to real, effective treatment. At present there is exciting work
being done at the Whittemore Peterson Institute in Reno Nevada - we online
ME'ers have won $65,000 from online competitions this summer to help fund
their work. We may have won a further $100,000! Tuesday is the prizegiving...

There is no evidence of any death threat. The worst that has been stated
was that one woman was found to be carrying a knife at a lecture he gave.
What kind of knife? We don't know. A pound gets you ten if it wasn't a small
legal penknife, carried to cut up apples or open blister packs.

The worst email to Wessely that has been mentioned, in all these vile and
incorrect press articles, said, at its strongest, "You Will Pay". David
Cameron said exactly the same thing to the rioters on a recent TV interview. Is
this a death threat?

So how bad are we? And how bad is Prof Wessely? For the answer to the
second question, check this out: (add the
www. if your browser needs it).

Ain't it the truth? Oh it's true alright. Stranger than fiction.

We're not retarded. Or lazy. Many of us had responsible careers before
illness struck. We are as many as 250,000 British citizens who get no
effective treatment for a severe physical illness. For more on that, read the
Myalgic Encephalomyelitis - International Consensus Criteria 2011 by Curruthers
et al. where you will find a concise explanation of the biomedical
processes behind the disease, fully referenced, with links.

Who are we? We are people with Myalgic Encephalomyelitis, an illness that
has been called atypical MS, that can be more debilitating than undergoing
chemotherapy or late-stage AIDS. We have found each other online.

Why are we doing this? We're not, if you mean making illegal physical
threats to ME/CFS researchers. There has not been one scrap of evidence to back
up the claims of harassment made in the article under discussion, or in the
previous, similar articles.

Where are we getting our information from? Online. PlosOne, Science and
other established sources, and many many ME forums and blogs. We are often
house or bedbound, and for me a laptop that I can use lying down means I have
access to the world on the web. Sure don't have it any other way. Too sick.

Simon Wessely and his colleagues are being shown up for the charlatans they
are. This press spin campaign has been created on the "attack is the best
form of defence" basis. The Wessely school has had a stranglehold on the
information about and treatment for what they call CFS or Chronic Fatigue in
the UK since the late 80s. They have always tried to deny the very
existence of ME.

Here's a quote from Wessely at the 9th Elliot Slater Memorial Lecture in
1994: "I will argue that ME is simply a belief, the belief that one has an
illness called ME"

And here's a quote from Peter White, about his recent PACE study and who he
was studying (Wessely is a co-author) from his defence of the study in the
Lancet recently (it was roundly debunked by both other scientists and
sufferers like me) "The PACE trial paper refers to chronic fatigue syndrome
(CFS) which is operationally defined; it does not purport to be studying

Yet the PACE trial results were spun and hyped to the rooftops in the
British press with headlines like "Exercise Is Best Cure For ME"

Wessely and co are experts of spin. Wessely is the spokesperson for all
things CFS/ME at the Science Media Centre. He has been in a strong position
for many years. This recent vilification of ME sufferers and advocates should
be taken with a very large grain of salt.

Permission to steal bits, stir it around, repost in any way that's useful -
if it is.