Tuesday, April 29, 2008

Exercise Limits and CFS

Can exercise limits prevent post-exertional malaise in chronic
fatigue syndrome? An uncontrolled clinical trial.

Journal: Clin Rehabil. 2008 May;22(5):426-35.

Authors: Nijs J, Almond F, De Becker P, Truijen S, Paul L.

Affiliation: Department of Human Physiology, Faculty of Physical
Education and Physiotherapy, Vrije Universiteit Brussel. j.nijs@ha.be .

NLM Citation: PMID: 18441039

Objective: It was hypothesized that the use of exercise limits
prevents symptom increases and worsening of their health status
following a walking exercise in people with chronic fatigue syndrome.

Design: An uncontrolled clinical trial (semi-experimental design).

Setting: Outpatient clinic of a university department.

Subjects: Twenty-four patients with chronic fatigue syndrome.

Interventions: Subjects undertook a walking test with the two
concurrent exercise limits. Each subject walked at an intensity where
the maximum heart rate was determined by heart rate corresponding to
the respiratory exchange ratio = 1.0 derived from a previous
submaximal exercise test and for a duration calculated from how long
each patient felt they were able to walk.

Main outcome measures: The Short Form 36 Health Survey or SF-36, the
Chronic Fatigue Syndrome Symptom List, and the Chronic Fatigue
Syndrome - Activities and Participation Questionnaire were filled in
prior to, immediately after and 24 hours after exercise.

Results: The fatigue increase observed immediately post-exercise (P=
0.006) returned to pre-exercise levels 24 hours post-exercise. The
increase in pain observed immediately post-exercise was retained at
24 hours post-exercise (P=0.03). Fourteen of the 24 subjects
experienced a clinically meaningful change in bodily pain (change of
SF-36 bodily pain score >/=10); 6 indicated that the exercise bout
had slightly worsened their health status, and 2 had a clinically
meaningful decrease in vitality
(change of SF-36 vitality
score >/=20). There was no change in activity
limitations/participation restrictions.

Conclusion: It was shown that the use of exercise limits (limiting
both the intensity and duration of exercise) prevents important
health status changes following a walking exercise in people with
chronic fatigue syndrome, but was unable to prevent short-term
symptom increases.

* * *

It's been my experience that I can "mosey" without getting worse, but walking at normal speed causes problems.  I also find that I have to take a day or two off between bouts of exercise.

The last time I followed doctor's orders to walk 1/2 hour every day, by the end of the week I was back in bed, so debilitated I could barely walk the 4.5 feet to the bathroom.  Doctor may think he knows best, but I have to listen to my body, and my body says every day is too much.  My way keeps me in better health than his way.

Do not let any doctor bully you into exercising.  There are plenty of studies out there that say exercise and CFS don't mix.  If he hasn't read them, print them out and highlight the sentence in the conclusion that says Exercise Makes CFS Worse.  I do stretches and resistance exercises to keep muscle tone, but I don't jog, I don't do aerobics, I don't go to spinning class, because I know those things can very quickly take me from feeling good to being bedridden.  And Dr. Cheney backs me up.

Honor your limits, whatever they may be.  There were times in this disease when getting from the bed to the kitchen 3 times a day was too much.  I bought a bunch of cereal bars and bottled water, stashed them under the bed, and found that walking to the kitchen only twice a day tipped the balance from making myself worse every day to holding steady.  At that stage, trying to walk 1/2 hour a day to appease a doctor would have landed me in the hospital the first day.

A friend got SSDI on her first try because she'd pushed herself to the point of hospitalization more than once.  And a year later is still suffering after-effects.  She was near-death when she was found collapsed on the floor, and the doctor suggested another hour or two might've been too late.  Not a risk I want to take, and especially because the judge I'm dealing with doesn't award benefits to anyone under 55, so I'd be near-killing myself for no reason.  (On the bright side, when I hit 55 and he does finally give me the benefits I have legally been entitled to since 2000, I will get a humongous check for back benefits, which I can invest for a nice additional monthly income the rest of my life.)

CFS -- Brain Virus?

Is chronic fatigue syndrome caused by a rare brain infection of a common, normally benign virus?

Journal: Med Hypotheses. 2008 Apr 24 [Epub ahead of print]

Author: Grinde B.

Affiliation: National Institute of Public Health, P.O. Box 4404,
Nydalen, 0403 Oslo, Norway.

NLM Citation: PMID: 18440157

Chronic fatigue syndrome (CFS) is a disabling disease of unknown
aetiology. A variety of factors have been suggested as possible causes.

Although the symptoms and clinical findings are heterogeneous, the
syndrome is sufficiently distinct, at least in relation to the more
obvious cases, that a common explanation seems likely.

In this paper, it is proposed that the disease is caused by a
ubiquitous, but normally benign virus, e.g., one of the circoviruses.
Circoviruses are chronically present in a majority of people, but are
rarely tested for diagnostically.
Normally these viruses do not
penetrate the blood-brain barrier, but exceptions have been reported,
and related viruses cause disease in the central nervous system of animals.

The flu-like illness that often precedes the onset of CFS may either
suppress immune function, causing an increased viremia, and/or lower
the blood-brain barrier. In both cases the result may be that a virus
already present in the blood enters the brain.

It is well known that zoonotic viruses typically are more malignant
than viruses with a long history of host-virus evolution. Similarly,
a virus reaching an unfamiliar organ may cause particular problems.

* * *

"Present, but rarely tested for" -- which is why they can't find anything wrong, because they're testing for the wrong things.  If they tested for the RIGHT things, they'd see in an instant that we're really sick, and it's a virus, not a psychiatric problem.

The person with me when I got sick ingenuously called it "brain fever".  The doctor ignored him, insisting the whole problem was that women just don't want to work.  Turns out, he was right, and the doctor was wrong ... the virus did, in fact, attack the brain.  But because the doctor didn't test for every virus under the sun, the doctor was able to say "all tests are normal", even when it was clear that the patient was not normal.

ME/CFS as a Mitochondrial Disease

ME/CFS As A Mitochondrial Disease.
ME/CFS is a mitochondrial disease like no other. There are lots of studies that implicate mitochondrial problems; Dr. Kuratsune and carnitine. Dr. Versnon and genomics; Dr. DeMeileir, Dr. Pall, Dr. Cheney and many others. But this problem cannot be studied in tiny fragments. It is time for a good study to look at the different steps of the body’s ability to generate energy. Lets hope we get to see it within our lifetimes.
Dr David S Bell MD, Lyndonville News. Volume 5, Number 2; April 2008
Information provided:
*  Hannah Poling Autism-Vaccine Case: Implications for ME/CFS-labelled patients (Mitochondrial Dysfunction)


* * *

Another nail in the coffin of those hard-headed people who insist that the problem is just depression or laziness.  Being a bit younger than Dr. Bell, I do hold out hope that within my lifetime they will find themselves laughed at as loudly and derisively as they have laughed at us.

Even I can understand that you won't find what you're not looking for -- testing for measles won't reveal that the patient has a broken leg, and x-raying his leg won't show that he's dying of AIDS.  But these so-called great medical minds think that if it doesn't show up on basic first-round blood tests, there's no reason to look any further, just consign the patient to the psychiatric trash heap.


That Was My Old Life/Past Life

'That was my old life; it's almost like a past-life now': Identity
crisis, loss and adjustment amongst people living with Chronic Fatigue Syndrome

Journal: Psychology & Health, Volume 23, Issue 4 May 2008 , pages 459-476

Authors: Adele Dickson [a];  Christina Knussen [b]; Paul Flowers [b]

[a] Department of Psychology, Napier University, Edinburgh, UK
[b] Department of Psychology, Glasgow Caledonian University, Glasgow, UK

Individual in-depth interviews were conducted with 14 people with
Chronic Fatigue Syndrome (CFS). The interviews centred on the
experience of living with the condition from the participants' own
perspectives. All interviews were transcribed verbatim and were
analysed using Interpretative Phenomenological Analysis.

Three inter-related themes were presented: 'Identity crisis: agency
and embodiment'; 'Scepticism and the self' and 'Acceptance,
adjustment and coping'. Participants reported an ongoing sense of
personal loss characterised by diminishing personal control and
agency. An inability to plan for the future and subsequent feelings
of failure, worthlessness and insignificance ensued.

Scepticism in the wider social environment only heightened the
consequential identity crisis.
The importance of acceptance for
adjusting to a life with CFS was highlighted. The findings are
discussed in relation to extant literature and issues for health
psychology are raised.

* * *

Dyno responds:

 I had a problem with some of the statements in that
  article, specifically including that one.

  I think that it's important for "outsiders" (those without CFS) to understand the severity of the condition and its impact on the whole being -- that it can completely obliterate not just any quality of life, but also any sense of self. I don't believe that the suicide rate
  for CFS is just due to intolerable pain or fatigue. I suspect it's
  equally caused by that complete loss of self. But I think it's equally
  important for outsiders to understand this in the *physiological* not
  psychological context -- that this condition is so very real and so
  very severe it causes these extreme personal side effects, that this
  much more than a "gee, you're tired a lot" illness. In other words,
  using the deterioration of the self and quality of life to prove the
  existence and severity of the illness, not to prove a psychological
  cause of it.

  I mean, any serious condition will have psychological effects. A study
  examining the emotional toll of AIDS or cancer or loss of a limb would
  help validate the sufferers and possibly shed light on their situation
  to outsiders. Which could then help get those people the emotional and
  financial support needed. The same could be done for those with CFS if
  the study is done right. I think that article sort of steps in the
  necessary direction, then falls short.


Memorial Website for Sophia Mirza, dead of CFS

Criona Wilson

28th April 2008

Sophia - A message from her Mother

Today, 9am, sees the launch of a website I have
created in memory of my beautiful daughter who died
of Myalgic Encephalomyelitis. It deliberately
coincides with a conference being held by the Royal
Society of Medicine on the subject of ME/CFS to
which many psychiatrists and psychologists have
been invited to speak.

ME is a physical illness but the problem facing most
ME patients is that a psychological causation of their
symptoms is part of the dogma that has been foisted
on them by a very small but highly influential group
of psychiatrists
who have established a niche market
in what is a controversial but highly debilitating

In June 2003 a warrant was granted through Brighton
Magistrates Court that resulted in the sectioning of
my daughter, Sophia Mirza, because she would not
accept psychiatric treatment for her physical
condition, Myalgic Encephalomyelitis (ME).

Despite our Solicitor being confident that there were
no grounds for a warrant to be issued, a warrant was
granted and my very ill daughter was sectioned
against her will until a Tribunal sanctioned her
release almost two weeks later.

My daughter never recovered from the shock of this
incarceration and died in November 2005.
coroner's verdict recorded that she died of CFS/ME.

Six doctors and a social worker were among the
people who were involved in Sophia's case.

I have tried, without success, to gain justice from
the GMC and Social Services over the dreadful
treatment my daughter received, but to no avail. I
have written to two Attorney Generals, numerous
MPs and solicitors - again with no result. It seems
that ordinary people like me and my daughter can be
treated in the most appalling way and no-one is

I have therefore decided to publish all letters and
communications appertaining to my daughter's ordeal
at the hands of the authorities, in an effort to ensure
that this should never happen again to someone
suffering from ME.

I hope that the doctors and social workers involved
in my daughter's care will now reflect on what they
did and learn from their mistakes andintransigence.

I hope that other professionals will also learn
lessons from what I have published and that no
other person with ME will be treated so callously.

For more information see www.sophiaandme.org.uk

* * *

This is the point in blogging about CFS, suing doctors for malpractice, etc.: to make doctors think twice about slapping an unwarranted psychiatric label on patients. 

To this day, one of my doctors says the whole problem was "nothing you said made sense", i.e., I was not telling him what he expected to hear from someone who was depressed, so my symptoms didn't make sense.  In fact, I knew which symptoms would differentiate the two, so I stressed those symptoms, but he'd already made up his mind I was just depressed.  If he'd known the first thing about CFS, he would've recognized that I was not describing depression. 

With luck, the next patient who comes to him with a prior CFS diagnosis will be told what I should've been, "you'd be better off with another doctor" instead of arrogantly changing her diagnosis and making her worse by treating her for things she doesn't have and then verbally abusing her because the wrong treatment doesn't make her better.

Like Sophia, I will never recover from the bad treatment.  I've been told that I will never work full-time again because it took so long to find a doctor willing to give me the right pills instead of platitudes and useless anti-depressants.

In a press conference a few days ago, a woman who was wrongly imprisoned was asked "are you angry?" and responded "wouldn't you be?"  It struck me that this was a good response for CFS patients, too.  We wrongly get thrown in psychiatric hospitals, are victims of malpractice that results in our health deteriorating, doctors' ignorance makes us too sick to ever work again, and we are expected to just smile and take the abuse because of the prevailing attitude that disabled people should be thankful that they get any medical care at all.
Well, put yourselves in our shoes.  If a doctor rendered you permanently disabled while at the same time filling your medical records with comments that made it impossible for you to get Disability benefits, wouldn't you be angry? 
We have CFS patients living in gutters, through no fault of their own, because doctors fed them one anti-depressant after another, trying to cure them of what they don't have, and then judges refuse them the disability benefits they have earned and are legitimately entitled to.  Wouldn't it make you angry, when you're the victim, to be treated like the criminal? 
And especially when the system lets the real criminal off the hook, with statements like "the Medical Board does not have the resources to investigate every complaint and therefore only investigates cases which resulted in loss of life or limb" -- those of us who lost "life as we know it" and are now permanently disabled simply get brushed aside as not having suffered enough to deserve justice.
As an old T-shirt said "if you aren't outraged, you aren't paying attention".