Saturday, February 4, 2012
Friday, February 3, 2012
Thursday, February 2, 2012
SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.
Western Mail Letters.
If Trudy (played by Rachel Isaac) had phoned in sick (The Office star's
battle with ME, Western Mail, 28 January 2012 --
and her "Office" manager, David Brent, was equally ill-informed and
sadistic as Ricky Gervais, the actor who plays him, he would have said,
'M.E. - not MS, not the crippling, wasting disease - oh no, M.E. That's
the one where, "'don't feel like going to work today," ...' (You Tube* -
see below my signature for links, if you wish to see Ricky perform it).
Ricky says that he has apologised to people with M.E., 'I thought it was
psychosomatic but it's physiological ... very misunderstood, so easy to
ridicule ... the symptoms are not apparent, like losing a limb ... they
say, "We're tired," and we go, "How do we know that," ... seems like a
molly coddling society that accepts this new disease that wasn't around
100 years ago [Sic. This is not necessarily true]' Many of us do not
accept his as a sincere apology since he later repeats the same offence
elsewhere and does the same to people who have other illnesses and
disabilities, who, "are not gonna have a go at me, are you?" I don't
think Ricky does believe that there is a real illness called M.E.
It is true that there is no universally agreed diagnostic test for M.E.
- such as a blood test for Diabetes, or a scan for MS - but you would
have to believe that millions around the world, with so much to lose and
nothing obvious to gain, were malingering or hypochondriacal. The legal
principle of, "innocent until proved guilty" seems to be inverted here
to, "faking until proved ill."
I believe that Rachel Isaac was genuinely ill but I do wonder whether
she had M.E. (Myalgic Encephalomyelitis), or some other illness. She
might, for example, have been burnt out, exhausted, by all the events
happening in her already busy life, which called for rest, or a change
of lifestyle, to put her right; or she may have had a viral infection,
one like Epstein-Barr (Glandular Fever), which took an unusually longer
time from which to recover, as did Shadow Home Secretary Yvette Cooper
and actress Barbara Windsor. These are examples of chronic illness but
not M.E. Some people think it doesn't matter and we can diagnose all
illnesses that have this rather vague symptom of "fatigue" under one
collective term, Chronic Fatigue Syndrome (CFS). It is known, however,
from hard-knock experience and research evidence (Twisk& Maes, 2009)
that treatments recommended for some CFS patients, such as Cognitive
Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), may be
disappointingly ineffective and even harmful for M.E. sufferers.
Incidentally, people with MS were once treated with the same scepticism
that M.E. sufferers are now expected to endure, until a test confirmed
it for them. We have learnt nothing from this experience. It is no
Dr John H Greensmith
ME Community Trust.org
* We have been unable to find the original version of Ricky Gervais,
alone, performing this sketch - we believe it may have no longer be
available to view on You Tube but the main substance is at the start of
these two videos.
Comedian Ricky Gervais on Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis (You Tube, 5 December 2010)
CFS/M.E - The Torturous Disease (You Tube, 24 August 2009)
--- Ends ---
Wednesday, February 1, 2012
Monday, January 30, 2012
Prosecutors claimed that no legitimate pain patient could possibly need the amount of medication Paey was taking. But once Paey was in prison, the state of Florida treated him with the same class of painkillers it put him in prison for possessing, and at the same or higher doses. "It became a comedy of bureaucracies," Paey told me in a 2007 interview. "One agency prosecutes me for taking too much medication... Then I get to prison, and the doctors examine my records and my medical history, and they decide that as doctors, they have to give me this medication... It raised a red flag in many peoples' minds that something strange was going on, here."
Labels stick and can lead to underestimating the seriousness of a disorder.
Published on January 30, 2012 by Toni Bernhard, J.D. in Turning Straw Into Gold
Labels matter. We quickly form judgments based on them. If we hear
someone called lazy, the label "lazy person" attaches in our mind even
though we may not have even met the person. The same is true for
labels given to many medical conditions. If the label for an illness
uses language such as "fatigue," we abstract from our experience and
think we know what it's like to suffer from it.
Some medical disorders have been named after the researcher who
discovered or described them in the medical literature (Alzheimer's).
Others were named after a famous patient (Lou Gerig's disease). The
result: instant legitimacy.
The trend, however, is to name illnesses and pain conditions by
describing their primary signs or symptoms. There may be sound reasons
for this trend, but it can lead to inaccurate labeling of people and
to unnecessary suffering by those who've been diagnosed with the
disorder or disease.
For example, people with Rheumatoid Arthritis are frequently put into
the same category as those with Osteoarthritis—a common condition
usually associated with aging in which the joints become painful and
stiff. But Rheumatoid Arthritis is a systemic autoimmune disease.
Joint pain and stiffness is just one of its many symptoms. The
suffering of those with RA is often trivialized because they're lumped
together with those who have arthritis. People with RA are told it's
no big deal, and often have to put up with insensitive comments, such
as "You're too young to have aching joints."
A second example. People withFibromyalgia (fibro: muscle, myalgia:
pain) do indeed have muscle pain. But anyone can have muscle pain if
he or she moves wrong or overdoes it during a work-out. The muscle
pain of Fibromyalgia can be so debilitating that some people can't
move without excruciating pain. In addition, muscle pain isn't the
only symptom of Fibromyalgia; yet, there you have it: fibro (muscle)
A third example. People with Chronic Fatigue Syndrome do experience
fatigue. But when those of us with this diagnosis hear others say,
"I'm tired too," we know that we've been labeled in a most inaccurate
way and that the seriousness of our illness has been disregarded. We
also know that the painful label "malingerer" may not be far behind.
I've written about the absurdity of that name in my piece The Stigma
of Chronic Fatigue Syndrome. I encourage you to read it if you want to
understand our frustration with this destructive label.