Friday, April 20, 2012
It might sound good, or at worst harmless to encourage people to have a
positive attitude and think positively about an illness. But this might not
With severe and prolonged illness the changes imposed can be sweeping. Real
world perceptions are altered right down to the level of 'who I am' and
'what is important' and 'where do I belong'. Anger, frustration and fear
might not only be normal and inevitable - but actually good ways to respond.
Nobody wants to lose their identity and beliefs about who they are. But if
radical changes to these are imposed by circumstances then such an upheaval
in the psyche is probably going to involve a major struggle.
A positive attitude might sound courageous but it may be simply denial or a
defence against the challenges to the ego. Attempting to deny the changes
and limitations of a life-altering illness may be nothing more than childish
wilfulness and denial. Clinging to the way one used to be or hoping to
regain what has been lost is automatic and common. So is anger and blaming
(both rational and irrational). As Bowlby remarks:
"Anger, it is not always realized, is an immediate, common, and perhaps
invariable response to loss... - evidence makes it clear that anger,
including anger with the person lost, is an integral part of the grief
If the sense of self is lost or drastically changed, and therefore the lost
person is oneself, it is not difficult to imagine that anger is likely to be
inevitable and with no rational target to direct the anger at - it might go
anywhere. Bowlby also states:
"If, however, the urges to recover and scold are automatic responses built
into the organism, it follows that they will come into action in response to
any and every loss and without discriminating between those that are really
retrievable and those, statistically rare, that are not."
People with severe M.E. are highly unlikely to ever be the same as they were
before they got ill. Full recovery is rare. The prognosis for people with
milder CFS is better, but still not particularly good. In spite of this,
the rule seems to be - don't accept that you are one of the unlucky
majority; you can be the one that recovers if you really want to; if you do
the right things and think the right things you will be ok. It might be all
very well for such wilful optimism to be a personal choice; but the fact is
that everyone is subject to bullying that dictates that this is the 'right
My impression is that a result of this is that the small minority, those
that might completely recover, are the ones that must be pandered to. They
must not be confronted with doom and gloom. They must not accept, adapt,
rediscover themselves and the world where everything has changed. Why? Why
this delicacy maintained for the benefit of the few lucky ones? This
delicacy makes the horror experienced by too many people a shameful thing
that must only be discussed with others sharing a similar experience, or
something that must fester privately in one's own thoughts. This should not
be necessary. It deprives the majority of the opportunity and the right to
adjust in the best way for them, to the devastating changes to their life.
As Bowlby points out:
"Only after every effort has been made to recover the person lost, it seems,
is the individual in a mood to admit defeat [isn't this a victory?] and to
orient himself afresh to a world from which the loved person is accepted as
Getting over this hurdle and accepting a new world reality is a great
achievement and one that is likely to be enormously beneficial to the
individual. But it seems that admitting this must be avoided. The wessely
school would have us believe that if one of the minority that have a good
prognosis went through this process - they would be doomed to a life of
illness; presumably because they would not be able to recognise if they
actually recovered; having been programmed into 'illness behaviour'.
It really is a stupid as it sounds. But unfortunately people buy into it
because they want to believe they have control over their life, their
destiny and their illness. They want to believe they can 'choose' to be
well. And they most definitely do not want to believe that the 'person
lost' is never going to be recovered - in spite of the odds making this the
most likely outcome.
Some of the Wessely school have built their careers on what amount to
Positive or Negative Thinking theories. They've delved into the minds and
observed the behavior of people with M.E.; done their little sums and
strutted their scientific stuff in medical journals. When their own
research tells them in figures they cannot deny, that they are wrong - they
go right ahead and do the research again. And they will keep right on
repeating it because they just cannot accept the truth.
That is what Positive Thinking can do for you. Help you to deny reality,
live in a fantasy world where it WILL be the way that you want and nobody
and nothing can prevent that. As a belief system, it might well be one that
most people will hold onto for at least some time when their life changes
drastically. They may even choose consciously or unconsciously to maintain
those beliefs because they suit them. It is their choice.
But is foisting or fostering such an irrational belief system in others
justifiable or ethical? Some people make a lot of money flogging
pipe-dreams and I believe some get a warped psychic buzz out of convincing
people they can control things that are in reality, beyond their control. I
have some unprintable thoughts about such people; but they would probably
dismiss me as 'negative'.
Wednesday, April 18, 2012
Fired Whittemore Peterson researcher wants rulings tossed
2:39 PM, Apr. 18, 2012
Written by Martha Bellisle
After a lawsuit filed by the Whittemore Peterson Institute against a
former researcher passed through three judges and landed with a
fourth, their lawyer asked for a hearing so they can argue for the
damages they hope to collect.
But Dennis Jones, lawyer for fired researcher Judy Mikovits, objected
to that plan, saying it was premature. Jones said he would file a
motion Wednesday challenging all of the orders made by Washoe District
Judge Brent Adams, who took himself off the case after disclosing that
he received campaign contributions from Harvey Whittemore and his
Whittemore is married to institute founder and president, Annette
Whittemore, and is president and director of one of the institute's
subsidiaries. He has been the subject of secret grand jury hearings to
determine if he violated federal laws by using friends, family and
associates to make campaign contributions.
In a motion, Jones said all of Adams' rulings were tainted for the
same reasons the judge recused himself.
"The facts that led to Judge Adams' recusal were known to him at the
time he made various rulings in this case yet he failed to disclose
them to the parties until months later," Jones said in his motion.
Therefore, the judge's rulings "are void or voidable" so the new judge
should reconsider them, Jones said in the motion. He also suggested
that the judge could put the civil case on hold until a criminal case
against Mikovits is resolved.
The institute filed a lawsuit against Mikovits last year after she was
fired and left the area, returning to Ventura, Calif. The suit claimed
she stole notebooks containing important research material when she
left, a claim she denied.
When the institute first filed the lawsuit, it was randomly assigned
to Judge Steven Elliott, but WPI lawyer Ann Hall filed a peremptory
challenge and it was sent to Adams. After hearings and motions, Adams
ruled against Mikovits and ordered her to return all materials. But
just before the parties were to argue for damages, Adams disclosed
that he had received $10,400 from Whittemore and his companies.
Adams said he needed to step down over concerns about "the appearance
The case was randomly assigned to Judge Jerry Polaha, who immediately
disclosed that he, too, had received campaign money from Whittemore.
But he insisted that he could oversee the case without bias.
Jones told Polaha during a hearing on April 3 that he believed in the
judge's ability to be fair, but said Mikovits issues "marching orders"
to secure a new judge. Jones filed a challenge, and Polaha stepped off
It was randomly assigned to Judge Janet Berry. A search of campaign
finance reports by the Reno Gazette-Journal did not find any
contributions made by Whittemore or his companies.
Berry must now decide whether she will allow Mikovits to challenge
Judge Adams' rulings, which would basically allow them to start over.
Promising news for people with MS, news of a new drug that slows disease progression. From the LA Times: http://lat.ms/J37tUy
Please plan to join us for our next webinar on May 9. Novelist Roger King ("Love and Fatigue in America") and Wilhelmina Jenkins will talk about his book, their journeys with CFS and the common experiences they share. Learn more about both guests and this special event: http://bit.ly/May9-webinar Free to all; please share!
By Kate Benson / Reporting on Health
April 15, 2012
In an era of "modern" medicine it sometimes seems as if many of the
biggies have been knocked out compared to centuries past. The
previously untreatable has become treatable and in many cases
preventable. Tuberculosis? Check. AIDS? Check. Heart disease? Check.
And with knowledge can come lower societal costs as well as health
care cost containment.
But what about patients with rarer or more complex or even contested
diseases where researchers have very different viewpoints and
ideological stances leading to highly conflicting literature and
research funds are distributed unevenly between the different points
What about diseases where the usual prescription, whether behavioral
or pharmaceutical, isn't effective even if it may be "cost effective?"
What about the indirect economic costs associated with rising
disability linked to diseases we don't yet know how to treat
effectively in the majority of cases?
In, "CFS: One Disease and Its Costs," PBS broadcaster Llewellyn King
ledes with, "What would happen to health care if a million new
patients with just one of many now incurable and largely untreated
diseases flooded the system, relying on medicine that could cost
$70,000?" Mr. King argues that this might not be a bad thing. (The
current cost to the U.S. economy is estimated at $25 billion annually
for direct medical costs and lost productivity.)
Although Mr. King addresses one relatively rare disease where the
"usual" isn't working very well, there are many others such as Gulf
War Illness, atypical MS, Lyme Disease or the autism spectrum for
Are they at the top of most journalists' list to write about given the
smaller populations they effect and how complicated and polarized the
topic may be? Probably not, but these diseases, like cancer and AIDS
before them, they may be bell weathers of where health policy and
medicine are failing and where both the costs and the human toll are
The secret to keeping this beverage sweet-tasting, however, comes further on down, in the form of aspartame, acesulfame potassium, and sucralose.
So, really, all that's changed with this new beverage is that 6 teaspoons of sugar have been substituted with three sweeteners that are even worse.
* * *
Personally, I've switched to Mexican Coke (now being imported into some areas of the US), which is made with sugar. Period. No corn syrup, no aspartame, no nuthin except pure natural sugar.
Tuesday, April 17, 2012
Four years ago a 38-year-old adjunct professor at American University named Fred Holliday began suffering from a variety of ailments: he was losing weight, his blood pressure went up. Then he cracked a rib. And he started suffering from debilitating back pain. Each time a new problem arose, the Washington, D.C., resident visited his doctor, who dealt with his symptoms piecemeal. First she prescribed blood-pressure medication. At another visit, she chalked up his fractured rib to violent coughing from a cold he had. Then she prescribed narcotics for his back. When his pain grew worse, she simply increased the dose of painkillers.
After months of this, Fred's wife, Regina, looked up his symptoms on the Web. Together, they pointed to kidney cancer. When the worried couple went back to the doctor, Regina recalls, she walked into the exam room, reading Fred's chart, and without looking up, asked, "Mr. Holliday, do you think you're depressed?" It was a routine question, based on the number of his complaints. Regina started laughing in disbelief. "Of course he was depressed," she says. "She wasn't taking care of him." At Regina's insistence, the doctor ordered an MRI, which showed that Fred had kidney cancer. He died about three months later.
These days, stories like the Hollidays' are cropping up all over, and while most don't have such tragic endings, they are signs that something in the world of medicine is seriously amiss.
or CFS directly, but rather from associated complications. This is an
important difference in science and medicine even though in human
terms it means little because the end result is what is more
important. For example, in terms of science, no one dies directly from
AIDS, they die from AIDS-related diseases and conditions. Or when
someone dies from a gunshot wound the actual death is from the
specific associated trauma. If it were the bullet that was the actual
cause of death then everyone who had ever been shot would die - and
that doesn't happen.
Letchworth 20-year-old's sudden death caused by dysfunctional immune system
By Nick Gill
Tuesday, April 17, 2012
A CORONER investigating the death of a 20-year-old woman who died
suddenly in her bed has recorded a verdict of natural causes.
An inquest into the death of Tara Morgan was held today (Tuesday),
after she was found dead at her home in Abbotts Road, Letchworth GC,
in September last year.
Speaking at Hatfield Coroner's Court, deputy coroner Graham Danbury
described the situation when Tara was found dead by her two brothers,
James and Aaron, on Sunday, September 4, 2011.
He said: "There was no response when she was called a few times. Both
of her brothers went to get her up and they found her in bed. The
ambulance service arrived but were unable to revive Tara, who was
pronounced dead on their arrival and probably had been for some time."
The former Woolgrove and The Valley school pupil was taken to Lister
Hospital where her death was recorded.
Dr Rajiv Swamy, consultant pathologist for the North and East
Hertfordshire Trust, said her death was probably caused by a
dysfunctional immune system, after Tara had been unwell for a couple
of weeks prior to her death.
Tara, who was born with a learning disability, had a history of
headaches, muscle aches, joint pains and a bloating of the abdomen.
"There is a history of being unwell for some time without a proper
robust reason," said Dr Swamy.
He also said a toxicology revealed that fluid had gathered in fluid
sacs in the lungs, with white blood cells and blood found.
"A parasitic infection would have triggered an allergic reaction and
this is probably the reason we had a lot of white cells," said Dr
He added that Tara's death could be related to chronic fatigue
syndrome, a disorder defined by persistent fatigue.
Tara's mother, Amanda Lovering, sobbed during the inquest and said "I
could have stopped it" after hearing about the presence of lice.
But responding, Dr Swamy said: "I want to reassure you that with the
lice infection the body did respond to it appropriately. I do not
believe that was the direct cause of her death.
"It has affected the immune system but that had been dysfunctional for
quite some time. I'm at a loss other than this possibility to explain
what happened to your daughter."
Summing up, Mr Danbury said: "This is a case of something in the body
going wrong over quite some time. In the light of what Dr Swamy has
told us, I will record a verdict in respect to the death of Tara as
respiratory and cardiac arrest due to autonomic neuropathy."
Tara, an avid Luton Town supporter, had been studying child care at
North Hertfordshire College at the time of her death.