"Be careful about reading health books. You may die of a misprint." —Mark Twain
Saturday, September 24, 2011
Margaret Williams 24th September 2011
On 23rd September 2011 in its "News Focus", the journal Science published a
chronology of events surrounding the putative relationship of a retrovirus
with ME/CFS (False Positive; www.sciencemag.org ), in which psychiatrist
Simon Wessely was quoted: "People will rather go over Niagara in a barrel
than ever getting involved in CFS again".
His statement is clearly contemptuous about everyone suffering from ME
(known by him and his colleagues as "CFS") and it seems designed to ensure
that biomedical research into the disorder will not proceed. Such overt
discouragement of urgently-needed research into ME is contrary to the basic
tenet of medicine, which used to be: "First do no harm".
Professor Wessely's latest jibe illustrates exactly what should not occur
when clinicians are dealing with sick and vulnerable people: "The most shameful behaviour is to engage in a contest of meanings with a patient, denigrating or ridiculing what one does not agree with" (Healing beyond the
body – Medicine and the Infinite Reach of the Mind; Dr Larry Dossey; Piatkus
Wessely certainly does not agree that biomedical research into ME is needed;
he is well-known for his belief that ME/CFS is "somatisation par excellence"
(J Psychosom Res 1994:38:2:89-98) and for his British Medical Journal
podcast on 5th March 2010: "We're not going to go doing more and more tests
to find out what the virus was because, frankly, even if we found it there's
nothing we're going to do about it. We're in the business of rehabilitation"
It is not surprising that Professors Wessely, Peter White and Michael
Sharpe, all of whom were involved with the PACE Trial, are held in deep
disregard by those whose lives have been wrecked by ME/CFS and who – rightly
– are both exasperated and infuriated at repeatedly reading the inane
description of their disease as fatigue, with some cognitive impairment, and
perhaps a bit of depression thrown in for good measure.
Each and every time that Wessely makes yet another denigratory attack on
people with ME, there is a need for attention to be drawn to the reality of
ME, which cannot be repeated too often. ME is not "fatigue", accompanied by
a few memory problems and depression, nor is it an aberrant illness belief
that has resulted in reversible deconditioning, as the Wessely School
ME is a devastating multi-system inflammatory neuroimmune disorder, with
extreme malaise; nausea; abdominal pain and diarrhoea; frequency of
micturition with nocturia; post-exertional exhaustion almost to the point of
collapse; inability to stand unsupported for more than a few moments,
sometimes being too weak and painful to walk; inability to walk upstairs or
to maintain sustained muscle strength, as in brushing one's hair; inability
to carry a shopping bag, or dry oneself after a bath, peel vegetables or
prepare a meal, with recurrent mouth ulcers that make speaking and eating
ME is neuromuscular in-coordination, not only of fine finger movement with
clumsiness and inability to control a pen and to write legibly, but also of
the larynx and oesophagus – there is a need to swallow carefully to avoid
choking, with oesophageal spasm and pain.
ME is constant danger of falling because of balance disturbance (ie.
dysequilibrium or loss of balance); staggering gait (ataxia); dizziness on
moving, with episodic incapacitating vertigo; difficulty with voice
production, especially if speaking is sustained; expressive dysphasia
(inability to find the right word); muscle cramps, spasms and twitching and
spasmodic trembling of arms, legs and hands.
ME is frequent episodes of angor animi (brought about by abrupt vasomotor
changes, when the heart stops beating then crashes furiously, causing
difficulty breathing and uncontrollable shaking, and feeling that death is
imminent); there may be an urgent need for oxygen.
ME is photophobia; difficulty in focusing and in visual accommodation, with
rapid changes in visual acuity; blurred and double vision; sometimes actual
loss of vision; eye pain; swollen and painful eyelids, with inability to
keep the eyelids open.
ME is tinnitus and hyperacusis, for example the noise of a lawnmower can
cause acute distress and nausea; heightened sensory perception (eg. acute
sensitivity to being patted on the back; inability to tolerate lights,
echoes, smells, movement, noise and confusion such as found in a shopping
mall or supermarket without being reduced to near-collapse).
ME is peripheral neuropathy; numbness in the face; parasthesias; altered
sleep patterns, with hypersomnia and insomnia.
ME is severe dysautonomia, including alternate sweats and shivers;
temperature dysregulation, with intolerance of heat and cold; tightness of
the chest alternating with a moist chest; breathing problems -- shortness of
breath on minimal exertion; the need to sleep upright because of weakness of
the intercostal muscles; pronounced cardiac arrhythmias; lack of bladder and
bowel control; orthostatic tachycardia; orthostatic hypotension, with
extremely labile blood pressure that is not amenable to therapeutic drugs.
ME is intermittent palindromic nerve pains; muscle tenderness and myalgia,
sometimes burning or vice-like; typically shoulder and pelvic girdle pain,
with neck pain and sometimes an inability to hold the head up.
ME is hypovolaemia, with blood pooling in the legs and feeling faint due to
insufficient blood supply to the brain; there may be swollen feet and
ME is intermittent crushing chest pain akin to a myocardial infarct;
segmental chest wall pain; subcostal pain; vasculitic spasms, including
headaches; cold and discoloured extremities, with secondary Raynaud's
Disease; easy bruising; peri-articular bleeds, especially in the fingers;
leaking blood vessels; cutaneous vasculitis with rashes; flushing of the
face (sometime just on one side); flushing and swelling of fingers and
hands, with vasculitis of feet and (in females) the breasts.
ME is pancreatic exocrine dysfunction leading to malabsorption; reduced
liver function and demonstrable adrenal insufficiency.
How Wessely could possibly justify encouraging scientists not to engage with such a devastating disorder is incomprehensible, yet he has been taunting and ridiculing patients with ME for years, denying their illness (Susanna Agardy; Co-Cure EDU: 25th August 2011).
The first tenet of medical research used to be that it was necessary to have
as homogeneous a cohort as possible, this being another tenet that seems to
have vanished – witness the moving of goal posts by the Wessely School.
For example, contrary to accepted scientific practice, the PACE Trial
Investigators deliberately chose broad entry criteria which included people
with psychogenic fatigue, idiopathic fatigue and fibromyalgia – quite
different disorders – claiming that they were all manifestations of
medically unexplained fatigue, despite the fact that the trial purported to
be studying those with the discrete disorder "CFS/ME".
Deliberately to broaden entry criteria for a clinical trial to include
patients who do not have the disorder allegedly being studied contravenes
elementary rules of scientific procedure.
As noted by others: "Mixing in people who do not have a disease with
patients who do confounds the results and conclusions of any study
regardless of the disease or disorder being studied" (Kelly Latta; Co-Cure
RES; 15th September 2011).
However, having claimed for many years that ME, CFS, irritable bowel
syndrome, fibromyalgia, hyperventilation syndrome, "atypical" chest pain,
tension headache, pre-menstrual syndrome, globus hystericus and multiple
chemical sensitivity are all one single functional somatic syndrome, those
same PACE Investigators are now on record saying something rather different.
A recent article by BBC News health reporter James Gallagher says: "There is
emerging consensus that CFS/ME is not one illness"; Professor Peter White is
on record in the article stating: "Most specialist doctors (there are no
specialist NHS doctors in the UK apart from psychiatrists) and scientists
agree that it is more than one illness. It may be three to five separate
illnesses", whilst his co-Principal Investigator, Michael Sharpe, is now
saying: "The concepts of CFS and ME have been conflated as CFS/ME. That may
be right but it may be a bit like an apple/banana – we need to be clearer
what we are talking about" (http://www.bbc.co.uk/news/health-14883651 ).
That is precisely what biomedical scientists and patients with ME have been
saying for decades. The PACE and FINE Trials have shown that "the business
of rehabilitation" is unsuccessful. Is it not time for the Wessely School to
leave the field entirely and encourage new approaches based on hard science
rather than psycho-speculation?
Permission to repost.
Friday, September 23, 2011
Congressional efforts have been made through the BULB Act (Better Use of Light Bulbs Act) in HR 2417 and S395, and in a recent discussion with Andrew Imparato, Esq., Senior Counsel and Disability Policy Advisor for Senator Tom Harkin, he said that medical NGOs could email his office at [email protected] and request that the HELP (Health, Labor, Pensions & Health Committees) look into this on adverse health impact and disability accommodations/civil rights issues.
Scientific papers are located at www.cflimpact.com, but as we are receiving information daily, it has not been totally updated as of today. There are a couple of cites of which may be of interest to you regarding diabetes and vision that you requested.
I would also have your medical advisors contact Professor Havas directly with any specific questions on the mechanism of scientific effect on persons with diabetes, esp. blood sugar and vision. If you wish to particpate in the CFL Impact Working Group teleconference, or have any lighting/engineering questions, you may contact Jerry Straub at [email protected] or by phone at 517-263-0760.
Havas, M. 2006. Electromagnetic Hypersensitivity: Biological effects of dirty electricity with emphasis on diabetes and multiple sclerosis. Electromagnetic Biology and Medicine, 25: 259-268, 2006.
We have just had notification that the European Union's SCENIHR's draft new artificial light
preliminary Opinion is out for comment by 30 September. The Opinion and associated information with how to send your comments is available on the SCENIHR website at the following link:
This goes into properties of the lighting and how preexisting medical conditions are affected. It goes into some length about the effects on vision. LEDs have the least adverse effects, and are more green x 3 at this point, but need a year or two of research to bring affordability and some light color issues into reality.
Thanks so much for any assistance you can give in our cross-disability effort. Your legislative and policy experience in helping enact the Americans with Disabilities Act Amendments was greatly appreciated. I understand that your unofficial opinion based on that work was that the "reasonable modifications of policies and procedures" would be the issue, and balancing that out the reasonable prong would be key.
Thursday, September 22, 2011
We have just had notification that SCENIHR's draft new artificial light
preliminary Opinion is out for comment by 30 September. The Opinion and
associated information with how to send your comments is available on
the SCENIHR website at the following link:
Tuesday, September 20, 2011
SITES AND USE IN NEWSLETTERS
I have posted this comment on a thread following an article (about M.E.
costing £102 million) in The Sussex Argus here
but which could apply universally to any about M.E.
drjohnMECommunityTrust says ...
8:50am Tue 20 Sep 11
"I do hope that people who want to engage in serious debate about M.E.,
especially those who suffer with it and their carers, do not take the
bait from provocative postings but ignore them.
I also hope that the Argus retains them as dreadful examples but does
not close the discussion as an alternative to a brawl or the extra work
of moderating, which is what happens on some other websites, maintaining
myth and ignorance, denying a voice and which is thought to be the
deliberate intention of some of those (often known as "Trolls") who do
this, for their own ends."
May I urge people to write in support here and also watch for all future
occasions and nip it in the bud. Please do NOT reply to Trolls, no
matter how provocative - it's what they want and, if you do, they have
succeeded in part 1 of the exercise and that is more likely to lead to
part 2 of having the discussion closed and ALL comments including the
best lost, which is probably what they want -- and you are helping them.
Please think very carefully before you post. Never do so in high
emotion, perhaps sleep on it, or ask someone before you submit.
ME Community Trust.org
Good advice. Thanks, Dr. John.
I've seen too many responses from PWCs that actually go to prove the other
side's claims that we're mentally unstable.
Monday, September 19, 2011
"Remember the Functional Capacity Evaluation that I was forced into by my disability insurance company? They either didn't know about post-exertional neuroimmune exhaustion (unlikely), which makes them incompetent (on second thought, maybe not so unlikely). Or they knew about it and took a calculated risk at my expense, which makes them dangerous (pretty darn likely). And for what? To get data that has absolutely no bearing on my disability claim, which is why they were forced to continue paying my benefits."