Friday, December 3, 2010
If you can, please take a minute to share our link w/ a hiring mgr, small business owner or someone who might otherwise not know about us & help us get one step closer to a world where everyone thinks beyond the label.
In the intervening years, Hillenbrand has experimented with an array of treatments, including steroid hormones, daily vitamin B-12 shots, a gluten-free diet, acupuncture, and Chinese herbal remedies. "They didn't help," she says, "and in some cases made things much worse. So because of the way a seemingly small mistake can land me in bed for years, I've become very conservative. The most effective thing I've done is to learn, through trial and error, how best to manage my body—eating bland, easy-to-digest food, keeping the temperature in the house low, and always stopping myself the moment I feel myself sliding into fatigue."
When possible, she also practices yoga, not only to prevent her muscles from atrophying but to maintain her emotional balance as well. "It's not just the poses, but also the meditation," she says, "and learning and applying the philosophy behind it: acceptance, living in the moment, focusing on being peaceful, being alive to what is beautiful and good all around me.
... since there’s still no treatment for CFS, once she was diagnosed, her medical bills became quite low. The usual luxuries (travel, clothes, fancy restaurants) hold no appeal, either. The disease complicates digestion, so Hillenbrand’s diet is spare and unchanging: Wheetabix and skim milk for breakfast, toast with almond butter and blueberry spread for lunch, and baked chicken with baby-food vegetables for dinner."
* * *
My health has not been as easily damaged as Laura's, so I've been more of a risk-taker with treatments. You name it, I've probably tried it: ACTH, powdered adrenals, 5HTP, carnitine, CFS/Fibro Formula from www.DrRodger.com, someone has recently suggested Lysine... Some gave me a bit of a bounce, others had no effect at all. My theory is that I will take the first bottle of something and then stop for a few weeks. Do I backslide without it? If not, then either any improvement was a coincidence, or whatever deficiency has been corrected. I'll periodically stop all these things to judge whether they are still providing a benefit.
The big thing for me was finding the tipping point -- which at one point was so low that 3 trips a day from the bedroom to the kitchen for meals was too much -- and pacing myself to keep energy expenditure below that level. The stumbling block in conversation, though, is people who don't grasp that "I feel fine" is not the same as "I am fine"; I feel fine because I don't overdo. It doesn't mean that I'm ready to jump back into life at full speed, simply that I've come to acceptance with the limitations and learned to live with them. I feel fine because I don't work 8 hours a day. If I tried to do that, I'd quickly feel worse.
Thursday, December 2, 2010
A study of "partner abandonment" revealed that husbands are six times more likely to leave sick wives than wives are to leave sick husbands. "Men have a much harder time being caretakers than women do," Sember observes. "Men find it hard to juggle that kind of responsibility, particularly if the wife has always been the one to fill that role." Moreover, "often women are more able to take time off from work to care for an ill spouse than men are."
MJ Glantz et al. (2009). Gender disparity in the rate of partner abandonment in patients with serious medical illness. Cancer, 115 (22).
* * *
You are NOT alone. Three-quarters of marriages affected by chronic illness end in divorce. The statistic is roughly 90% when the sick partner is the wife.
Wednesday, December 1, 2010
We've got two mainstream articles on XMRV, two good interviews with Laura Hillenbrand recognizing the severity of her disease, and a very empathic BBC article on M.E. in just this past week!
Okay, everybody, go to work, - go to the article website, click "mail to," and mail those articles out to anybody you can think of.
We want the media to know these stories are popular - and they ought to be!
The point isn't to respond - don't criticize them [I wasn't crazy about the NY Times one]. In this exercise, we just pass them on through their own "mail to" system (usually an envelope on the page to click on).
If you can't find that, then still pass on the URL to as many friends as possible, because they count hits.
AND WE WANT THEM TO KNOW THESE ARTICLES GENERATE LOTS OF HITS (=INTEREST)! [For that matter, maybe doing this can help CREATE lots of interest]
So here they are:
Newsweek on everything:
New York Times:
Wall Street Journal:
Margaret Williams 1st December 2010
The Barts "Fatigue Service" 25th birthday party held on 29th November 2010
was proclaimed by the Wessely School as being a mile-stone achievement in
their "service" for people with ME/CFS (known by them "CFS/ME").
Their celebrations gave rise to numerous critical appraisals of exactly what
has been achieved by them in those 25 years from ME/CFS sufferers'
perspective (this being the disorder in which the Wessely School profess to
be the experts and which they are allegedly studying in the £5 million MRC
PACE Trial, even though on 12th May 2004 the Parliamentary Under Secretary
of State at the Department of Health, Dr Stephen Ladyman, confirmed that GPs
were offered financial inducements – a more refined term than "bribes" – to
persuade patients who do not suffer from ME/CFS to agree to be entered into
the trial, which would seem to indicate that something is seriously wrong
with the PACE trial).
Given that behavioural interventions may help some people with
fatigue-inducing somatoform disorders, the self-congratulations and obvious
pride of Professor Peter White's "Fatigue Service" staff and others in the
Wessely School would not matter but for one cardinal consideration, which is
that they insist on asserting that, amongst those suffering from chronic
"fatigue", they are studying and helping patients with ME/CFS. There is
substantial evidence to the contrary, because they continue in their belief
that "CFS/ME" is a continuum of on-going tiredness perpetuated by
deconditioning and false illness beliefs, whereas ME/CFS is a chronic
inflammatory neuroimmune disorder in which the following have all been
demonstrated (ie. not simply hypothesised):
• evidence of disrupted biology at cell membrane level
• evidence of abnormal brain metabolism
• evidence of a reduction in grey matter
• evidence of widespread abnormal cerebral perfusion (hypoperfusion)
• evidence of central nervous system / immune dysfunction
• evidence of central nervous system inflammation and demyelination
• evidence of hypomyelination
• evidence of spatial disorientation
• evidence that ME/CFS is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between MS and lupus)
• evidence of significant neutrophil apoptosis
• evidence that the immune system is chronically activated (eg. the CD4:CD8
ratio may be grossly elevated, as seen in multiple hypersensitivities)
• evidence that NK cell activity is impaired (ie. drastically diminished)
• evidence of hair loss in ME/CFS
• evidence that the vascular biology is abnormal, with disrupted endothelial
• novel evidence of significantly elevated levels of isoprostanes (a marker
for oxidative stress, which in ME/CFS rises with exercise intolerance)
• evidence of impaired proton removal from muscle during exercise
• evidence of cardiac insufficiency and that patients are in a form of heart
• evidence of autonomic dysfunction (especially thermo-dysregulation;
frequency of micturition with nocturia; haemodynamic instability with labile
blood pressure; pooling of blood in the lower limbs; reduced blood volume
(with orthostatic tachycardia and orthostatic hypotension)
• evidence of respiratory dysfunction, with reduced lung function in all
• evidence of neuroendocrine dysfunction (notably HPA axis dysfunction)
• evidence of recovery rates for oxygen saturation that are 60% lower than
those in normal controls
• evidence that the average maximal oxygen uptake is only 15.2 ml/kg/min,
whilst for controls it was 66.6 ml/kg/min
• conclusive evidence of delayed recovery of muscles after exercise, with
ME/CFS patients reaching exhaustion more rapidly than controls, with this
failure to recover being more pronounced 24 hours after exercise (note:
there is no evidence of de-conditioning)
• evidence of mitochondrial metabolic dysfunction
• evidence of inability to sustain muscle power
• evidence of greatly increased REE (resting energy expenditure)
• evidence of enteroviral particles in muscle biopsies
• evidence of a sensitive marker of muscle inflammation (inflamed tissues
should not be exercised)
• evidence of on-going infection
• evidence that the size of the adrenal glands is reduced by up to 50% (with
reduced cortisol levels)
• evidence that up to 92% of ME/CFS patients also have irritable bowel
syndrome (80% of the immune system is located in the gut)
• evidence of abnormal gene expression (at least 35 abnormal genes --
acquired, not hereditary), specifically those that are important in energy
metabolism; there are more abnormal genes in ME/CFS than there are in cancer
• evidence of profound cognitive impairment (worse than occurs in AIDS
• evidence of adverse reactions to medicinal drugs, especially those acting
on the central nervous system, such as anaesthetics
• evidence that symptoms fluctuate from day to day and even from hour to
• there is no evidence that ME/CFS is a psychiatric or behavioural disorder.
Over a decade ago, Dr Elizabeth Dowsett, a former President of the ME
Association and a member of the Chief Medical Officer's Working Group on
CFS/ME, was clear:
"There is ample evidence that ME is primarily a neurological illness,
although non-neurological complications affecting the liver, cardiac and
skeletal muscle, endocrine and lymphoid tissues are also recognised…The
commonest causes of relapse are physical or mental over-exertion…. The
prescription of increasing exercise can only be counter-productive…. Some
20% have progressive and frequently undiagnosed degeneration of cardiac
muscle which has led, in several cases, to sudden death following exercise….
Neurological problems include exhaustion, weakness and collapse following
mental or physical exertion beyond the patient's capacity…. This arises from
metabolic damage…. Problems with balance are common in ME due to involvement
of spinal nerve tracts in the damaged brain stem…. Over 70% of ME patients
suffer from significant bone and muscle pain (a further consequence of brain
stem damage which seriously affects their mobility)…. Other patients have in
addition metabolic damage to muscle fibres…. 30% of patients with abnormal
exercise tests have evidence of persistent infection in the muscles, and
evidence of muscle infarcts…. (Patients with ME exhibit) jitter due to
incoordinated muscle fibre action, following damage to the neuromuscular
junction…. Patients with ME suffer a variety of symptoms arising from
autonomic nervous system dysfunction, including liability to a dangerous
drop in blood pressure on standing for more than a few minutes" (http://www.25megroup.org/).
It seems increasingly apparent that, no matter the calibre and quantity of
evidence that has long ago shown the Wessely School to be wrong about
ME/CFS, their 25-year old mind-set remains set in stone.
May be reposted.
NOV 29 PROTEST AT BARTS
By Mindy Kitei
From noon to 3 p.m. on Monday, ME/CFS patients in the U.K. are staging
a virtual and onsite protest to mark the 25th anniversary of London's
St. Bartholomew's Hospital ME/CFS service. The hospital itself,
however, is 900 years old, having been founded in 1123 by a courtier in
King Henry I's court. The hospital's future seemed precarious 400 years
later, when King Henry VIII—the king who beheaded or divorced four of
his six wives—ordered the dissolution of the monasteries, thereby
depriving the hospital of income, until King Henry VIII reendowed Barts
shortly before his death, in 1546.
Many ME/CFS patients believe that the treatment they've received at
Barts is more appropriate for medieval times than today.
Rosie O'Grady (not her real name) is one of them. The 43-year-old
disabled lawyer hails from Ireland but lives in England with a severe
case of ME/CFS. Before she became ill in 1996, she reminisces, "I rowed
on the weekends on the Thames with a rowing club in Greenwich. I loved
traveling and my friends. My life was very full."
All that changed 14 years ago when she became ill with a flu from which
she has yet to recover. She was an outpatient at Barts several times
from 1997 to 2005. To get government benefits in the U.K., she explains,
there's "intense pressure to show you're doing 'treatment.' If you had
a private income, you would not go there."
O'Grady says the doctors and rehab team at Barts wanted her to become as
physically active as possible. "I was told by the physio there everyone
could do 10 percent more activity every few weeks. They told me that any
time I felt unwell [I should] go for a walk and the fresh air would wake
me up. I completely placed my trust in them," she says, but like most
patients with ME/CFS pushing herself only made her worse. "Some days my
power to my fingers was so weak I could not pick up a coin," she
remembers. "I was desperate to get well and would have done anything
Her ME/CFS case was so severe that she moved into a YMCA where all food
and services were provided. "I could not even change the duvet on my
bed," she says. "I was unable to make a cup of tea and stay awake to
drink it." Today she is bedbound or in a wheelchair, unable to work or
remain upright for more than few minutes at a time. She believes that
her time at Bart's contributed to her ill health. Her sojourns there
left her physically weaker and "emotionally spun out from the lies and
Frustrated by the care at Barts, O'Grady made an appointment with a
rheumatologist at a different hospital, who prescribed
anti-inflammatories to treat the pain in her back and neck, which proved
helpful. When she had given her Barts doctor the same list of
rheumatologic symptoms, "he looked bored, said nothing and started
cleaning his fingernails," she recalls. "Another doctor claimed they
didn't need to run many tests on ME/CFS patients because "they would
know the results simply by looking at the patients."
For more information on the protest:
For information on how to email or fax a virtual protest:
A Facebook page devoted to the protest:
Tuesday, November 30, 2010
Monday, November 29, 2010
Sunday, November 28, 2010
Prelude to the Party?
Margaret Williams 27th November 2010
On Monday 29th November 2010 St Bartholomew's Hospital (Barts) "Fatigue
Service" will be holding a combined training day and birthday party -
complete with birthday cake - to celebrate 25 years of its "service" to
those suffering from chronic fatigue.
Will the "party piece" be the presentation of the PACE Trial results?
Those who have not been invited to the party may still have fun by reminding
themselves of some of the celebration party games that seem to be being
For example, the party-goers seem to believe that they are studying people
with the chronic inflammatory neuroimmune disease ME/CFS (known to the
party-goers as "CFS/ME") but is this just a "make-believe" party game? In
reality, according to Professor Peter White's letter of 14th July 2006 to
the West Midlands MREC, the party-goers have included anyone in their PACE
Trial "whose main complaint is fatigue (or a synonym)", thereby opening the
PACE Trial to anyone who is simply tired all the time (TATT); they also
included people with post-herpetic (ie. post-shingles) fatigue, people with
fibromyalgia (long known to be a distinct disorder, this being recently
confirmed by neurologist Professor Ben Natelson: Conf Proc IEEE Med Biol Soc
2010:1:5391-5394), and perhaps even some people with ME/CFS -- in fact, it
seems that everyone was welcome.
By seeming to play hearty party games and by guessing that all these
different disorders are one and the same, the party-goers seem to enjoy
themselves and to believe that different disorders which require different
management can all be cured by one single hit (ie. convincing sufferers that
they are only sick because they think they're sick). It's only make-believe,
Then there seems to be the game -- and this one seems to be a real
favourite - where patients are told that their symptoms must be ignored, and
that they must not seek medical help for their symptoms no matter how
serious or frightening they may be -- the CBT Therapists' Manual makes it
clear that there is nothing physically wrong, so there can't be anything
wrong except the patients' wrong beliefs (it seems to be OK for the
party-goers themselves to have wrong beliefs, all in good fun, of course).
Next comes what seems to be the real show-stopper: the party-goers seem to
be playing a magical game by convincing patients that they (the party-goers)
believe that the symptoms are genuine indicators of organic pathology, when
they don't believe that at all. The party-goers believe that there is no
pathology to account for the patients' symptoms, yet they assure patients
that their illness is "real" (which patients are encouraged to believe means
"physical" as opposed to "mental"), so again, it all seems to be a splendid
And it seems to be such a fun game not to measure objective levels of
post-intervention improvement; why bother with actometers when the
party-goers can rely on measures they created themselves and when actometry
might even show a worsening of symptoms? Professor Peter White knows that
the pro-inflammatory cytokine TNFa remains elevated three days after
exercise in "CFS/ME" patients (JCFS 2004:12 (2):51-66): "We found that
exercise induced a sustained elevation in the concentration of TNF-a which
was still present three days later, and this only occurred in the CFS
patients...Altered cytokine levels, whatever their origin, could modify
muscle and or neuronal function..The pro-inflammatory cytokine TNF-a is
known to be a cause of acute sickness behaviour, characterised by reduced
activity related to 'weakness, malaise, listlessness and inability to
concentrate', symptoms also notable in CFS", but it seems to be terrific fun
to pretend that this isn't of any significance and to withhold it from
patients and therapists alike (the Therapists' Manual on GET is dismissive
of studies showing immune dysfunction in ME/CFS).
It's been a grand 25 years for the party-goers, even though they may not
have cured a single person with ME/CFS in that quarter of a century.
Despite this, the happy party-goers seem not to have changed their belief
that they are dealing with a functional somatic syndrome, so behavioural
modification strategies really ought to work (the unsuccessful FINE Trial
may have been just a blip that can be rectified by further and lengthier
studies using the same interventions).
The privileged party-goers do seem to enjoy playing their favourite party
games, but whilst they are celebrating their wonderful achievements at the
top table with a birthday cake (and training others in their successful
management strategies), desperately sick patients must mount their protest
in the gutter.
Date: November 26, 2010
Evidence and controversies on the role of XMRV in prostate
cancer and chronic fatigue syndrome
The recent discovery of xenotropic murine leukaemia virus-
related virus (XMRV) in prostate cancer tissues and in the
blood of individuals suffering from chronic fatigue
syndrome has attracted considerable interest. However, the
relevance and significance of XMRV to human disease remain
unclear, since the association has not been confirmed in
other studies. XMRV is the first gammaretrovirus to be found
in humans. XMRV and murine leukaemia viruses share similar
structures and genomic organisation. Human restriction
factors such as APOBEC3 or tetherin inhibit XMRV replication.
Although XMRV induces low rates of transformation in cell
culture, it might be able to induce cancer by low-frequency
insertional activation of oncogenes or through the
generation of highly active transforming viruses. A
preference for regulatory regions of transcriptional active
genes has been observed after a genomic-wide analysis of
XMRV integration sites. Genes related to carcinogenesis and
androgen signalling have been identified in the vicinity of
integration sites. The XMRV genome contains a glucocorticoid
responsive element, and androgens could modulate viral
replication in the prostate. Evidence supporting the
involvement of XMRV in chronic fatigue syndrome is still
very weak, and needs further confirmation and validation.
Currently approved anti-retroviral drugs such as zidovudine,
tenofovir and raltegravir are efficient inhibitors of XMRV
replication in vitro. These drugs might be useful to treat
XMRV infection in humans. The identification of XMRV has
potentially serious health implications for the implementation
of novel techniques including gene therapy or
xenotransplantation, while raising concerns on the need for
screening donated blood to prevent transmission through
(c) 2010 John Wiley& Sons, Ltd.