Friday, November 16, 2007

Living With CFS: The Art of Pacing

As has been discussed in an online CFS support group recently, the key to living successfully with CFS is pacing.
 

After almost a year of taking pain pills to help me sleep, I am up to having about 180 good minutes per day (a vast improvement over when I had 5-10 minutes a day).  If I go over that, I know I'm going to feel terrible. 

The problem is, it's not 180 consecutive minutes; it has to be interspersed with rest periods.  Ideally, I'd do something 5-10 minutes and rest the remainder of the hour.  Good in theory, impossible in practice.  You cannot get to the grocery, through the grocery, home from the grocery, and the cold stuff in the fridge in 10 minutes.  Not even if you live right next door to the grocery, which I don't.  A standard weekly grocery run takes about an hour start-to-finish, and because I'm not able to do it 10 minutes at a time (Safeway takes a dim view of people napping on their floor), I know that I'm going to feel like hell the rest of the day, until I've rested enough to "refill the account" after the huge withdrawal I just made.

As we speak, I hear the cat knocking something down in the other room.  I've already done my 5 minutes of physical activity for this hour, and my 5 minutes for the next hour is slated for food preparation.  Depending what and how much she just knocked down, it might take me the rest of the day to get it all picked up.  But even if it's just a simple matter of picking up a few items and putting them back on the shelf that Her Majesty wanted to sit on, it still means that what I had planned to do 2 hours from now has to be rescheduled, which puts me behind schedule.  If she's made a bigger mess, then I wind up a full day behind schedule on my physical-activity tasks (which cannot take up the full 180 minutes,unless I want to spend the next couple days in bed with a pacing limit of about 10 minutes a day, barely enough to nuke canned soup and walk to the bathroom).
But I've gotten behind on my paid work due to an unscheduled crisis earlier this week, so tomorrow's entire 180 minutes should be devoted to catching up that, not whatever chores need to be rescheduled from today.
 

For more on pacing, read the writings of Ellen Goudsmit on Co-Cure, or easily googled.

But for me, it's time to lie down for my regularly-scheduled rest period so that I'll feel well enough to go fix my next meal.  That's the reality of CFS.  Not the myth that we "can do anything we want, except work because you don't want to do that".

(For the record, most of my blog posts are written off-line, a few minutes at a time over the course of  hours/days/weeks.  Writing them in one sitting would be too much not only for my CFS but also would cause intense wrist pain from a doctor-documented non-CFS problem, which would be disabling in its own right if the judge could see past the CFS diagnosis to look at the actual medical restrictions the doctors have issued which VocRehab says precludes doing ANY job.)

Thursday, November 15, 2007

High Court to decide if CFS/ME is mental illness or physical in first of its kind case

Source: Daily Mail
Date:   November 15, 2007
URL:    http://www.dailymail.co.uk/pages/live/articles/news/news.html?in_article_id=494200&in_page_id=1770


Yuppie flu campaigners fight 'mental illness' label
---------------------------------------------------

'Yuppie flu' campaigners are going to court to try to force the Government's
health watchdog to stop defining it as a psychiatric illness.

The National Institute for Health and Clinical Excellence (Nice) could
have to rewrite its new guidelines on chronic fatigue syndrome, also known
as ME.

A pressure group is taking High Court action in what is understood to be
the first case of its kind. The One Click Group, which has 8,000 online
supporters worldwide, is challenging Nice's treatment advice on the grounds
that it labels sufferers as mentally ill.

Nice told doctors in August this year that they should prescribe psychological
therapy and "graded" exercise for ME patients. But Jane Bryant, director of
One Click, said Nice ignored studies that show ME is a recognised medical
condition and not a psychiatric illness
. Ms Bryant's son Ben, 13, was
diagnosed with a form of ME six years ago.

The former public relations manager from London said: "This is going to be
a David against Goliath case. The guidelines have excluded the majority of
the medical evidence which proves that ME is a physical not a
psychological illness.
They (Nice) haven't listened to the patients."

ME is estimated to affect a quarter of a million people in Britain,
especially children. Symptoms include poor quality sleep, headaches and
bouts of infections.

The Medical Research Council (MRC) is carrying out two large clinical
trails into the effectiveness of treatments at a cost of 2.5 million
pounds.

The medical profession is fiercely divided over the exact cause. Some
experts are sceptical that ME is a specific illness and say the symptoms
are caused by mental health problems.

Others say that it is caused by a virus and that the type of exercise
recommended by Nice can even make the illness worse. It is understood to
be the first time that Nice has faced court action over its own health
guidance.

Earlier this year, drug companies lost a case against Nice over its
refusal to fund lifesaving dementia drugs.

The One Click Group is being represented by Saunders solicitors which is
expected to lodge court papers next Wednesday for the judicial review.

Dr Charles Sheppard of the ME Association said: "The Nice guideline is
seriously flawed because they take a 'one size fits all' approach to an
illness which manifests itself in many different ways. There is no
evidence that sufferers do benefit from psychological therapies."

Dr Neil Abbot from ME Research UK said: 'There is undue emphasis in the
final Nice guideline on psycho-social strategies.'

--------
(c) 2007 Associated Newspapers Ltd.

What if the doctor doesn't listen to you?

Although the article is about parents dealing with pediatricians, it's good advice for any patient whose doctor won't listen.  YOU are the one who lives in your body 24/7, you are the expert on what is happening with your body.  Don't let any doctor tell you that you are "imagining things", especially if your friends/family/co-workers see the same things you do.  Emphasize "my boss has commented that I ___, which I didn't used to", "Aunt Esther noticed _____" -- if you were a hypochondriac, other people wouldn't see anything wrong.
 
Don't let a doctor bully you into taking a medication that's caused problems before -- YOU will be the one who has to live with the consequences, not him. 
 
I was asked by an outside doctor "are they trying to kill you?", when I asked for a second opinion on taking a medication I'd previously been told not to take, which my doctor, over my strenuous objections, insisted "it'll be fine" and refused to change the prescription.  Hearing that my doctor's refusal to listen to me could have resulted in death was the end of my relationship with that medical group.
 
The fact is, there would have been no downside to giving me a trial of sleeping pills and/or pain pills as I requested -- other than the blow to the doctor's ego of having to admit that the patient was right.  The most important thing SHOULD be your health, not his ego.  If the doctor can't admit he was wrong, find a doctor who puts your health first.
 
After reading this, you have something I didn't -- the name of someone who can intercede: Dr. Vicki Rackner left her surgical practice to become a patient advocate. 
 
(The article contains advice from doctors who specialize in physician-patient communication.)
"I felt like she didn't completely believe everything I was saying," Redrick says.  Both Redrick and her pediatrician wanted what was best for Matthew, but they came at it from different directions, observes Dr. Jennifer Shu, a spokeswoman for the American Academy of Pediatrics.

"A parent should explain what they want to do. Then they can ask the doctor, 'What's the downside of doing what I want to do?' " says Shu, co-author of "Heading Home With Your Newborn: From Birth to Reality."  If they can't reach a middle ground, Shu suggests calling in another pediatrician from the practice. "Sometimes getting another person involved can defuse the situation."

Dr. Delia Chiaramonte says when a treatment has been going on for a long time and isn't working, a parent should begin to suspect a misdiagnosis.

"Because I don't have letters next to my name, doctors take what I say with a grain of salt," she says. Travis had an allergic reaction to the antibiotic. "They said they were really sorry. They said, 'We should have listened to you.' "

Doctor tells parents to stand up for child

The trick here, she says, is to stand firm, even when you know you're annoying the doctor. "You have to let go of the desire to be the good patient and make everyone like you," she says. She recommends questioning the doctor thoroughly.

There but for the Grace of God, go I

I’ve been having heartfelt discussions with a friend where we’ve joked "if it weren’t for bad luck, I’d have no luck at all". She’s had one bad thing after another happen in her life; I won’t bore you with the details, because they’re private and not important to this commentary. She’s just had another bit of really bad news. I don’t know how she stands it all.

And she doesn’t know how I stand it. To her, the worst possible fate – even worse than what she’s suffered through – is to have to spend so much time in bed. Like I used to be, she’s a go-go-go type of person. The idea of not being able to go out whenever and wherever she pleases, having to spend so much time resting instead of puttering around the house – she just shudders. It would drive her batty.

As bad as her life has been, she’s made it clear that she wouldn’t trade for mine, no way. (And, for the record, no thank you, I wouldn’t swap for her troubles, either.) She’ll keep her innumerable heartbreaks, as long as it means she can keep her health, too.

But those bouts of bronchitis growing up were good training. Stuck in bed for 6 weeks at a time, you learn patience. You figure out things you can do in bed: watch TV, listen to music, write letters, do needlework, read... And, let’s face it, with the Compleat Monty Python, the complete M*A*S*H, the complete Marx Brothers, I’m not likely to die of boredom. Die laughing, maybe.

Plus, it was a gradual process. The initial virus in 1987, I was only off work about a week, and I got back to 85% of normal. With each relapse, I got back to 85-90% of where I had been. It wasn’t like one day I was 100% and the next day I was 10%. More like, just before this relapse started and I went down to 10% over the course of a few months, I was regularly functioning at about 50% of where I’d been before I ever had the virus. For someone whose natural turbo-charged energy level allowed working 18-20 hours a day, a little over half of that still gave me the energy to hold down a full-time job: I just couldn’t do all the other things that I used to do (like hold second and third jobs, and do volunteer work, and do all the housework myself, and go on 20-mile hikes twice a month....)

Over the years, I had slowly jettisoned one thing after another. With each relapse, one more thing had to be taken off my plate. So, by the time this relapse started, I didn’t have to ditch my home business – that had disappeared a dozenyears earlier, per doctor’s orders. The only volunteer commitment I had left was a one hour meeting every couple months; I wasn’t on any committees or helping with the fundraising events, just letting the group pick my brain. I’d gotten rid of the live-in slob who required hours and hours of picking up after him, so my housework was down to one hour on Saturdays.

And that was the problem with this relapse. There was really nothing left to jettison when I started to feel bad. I was already down to the barest minimum of housework and my job, and I really couldn’t let either of them go because there was no one else to do the chores (cleaning agencies will not do laundry for insurance reasons – they don’t want to be on the hook if your washer floods or your dryer catches fire, and since I clean the bathroom and kitchen as I go, the laundry is what took most of the time on Saturdays) or to pay the bills if I quit my job. It was like telling someone who earns $1000 that the cheapest apartment is $1100; even if they forgo food and electricity, they’re still not going to be able to keep up.

After losing my job, my health took a big bounce. I felt pretty good after a few weeks rest – I actually felt better than I did before the relapse started. But after 5 minutes of yardwork, I felt awful. I rested a few more weeks, felt pretty good, and after a half-hour walk, I felt awful; the flu-like symptoms came back full-force. I rested a few more weeks, felt pretty good, and after a couple hours of volunteer work, I felt awful. Eventually it became apparent that I felt good because I was resting, but that any attempt to do anything brought back the symptoms. It no longer matched the criteria for having gotten Flu Strains A through Z in one winter; it was clearly the "exercise intolerance" that’s a hallmark of CFS (or Myalgic Encephalomyelitis, if you prefer the traditional name).

You learn to manage it. If feeling decent requires spending 21 hours a day resting and cramming the most important chores (and paid work) into the remaining 180 minutes, in short intervals interspersed with long rest periods, that’s a fact of life and you have to deal with it. You don’t have a choice.

Given a choice, my friend and I have both decided we’d rather keep our own set of troubles. I can’t imagine going through what she has, and she can’t imagine having to plan around a trip to WalMart sending her to bed for 2-3 days.

Monday, November 12, 2007

Three more perspectives on Dr. White's comments

Dr Charles Shepherd
Hon Medical Adviser, ME Association
MEA website: http://www.meassociation.org.uk

1  Firstly, I'm obviously going to be critical about psychiatrists so I'd like to point out that:

I've worked in hospital psychiatry - and made use of behavioural therapies

Psychiatric illness is real and horrible - so there's no intention of belittling psychiatric illness

The argument with the psychiatrists is about the way in which some of them are trying to turn an illness classified as  essentially neurological by WHO (in ICD10; G93:3)  into a psychosomatic illness.


2  The basis for CBT:

This is essentially a psychological treatment for mental health conditions - depression, obsessive disorders, phobias etc.

CBT is based on the idea that these illnesses are largely maintained by what are called abnormal/negative/unhelpful illness thoughts (the cognitive part) which lead to abnormal/negative/unhelpful behaviour (the behaviour part). 

In other words there is no underlying organic disease process.  The illness is a essentially a behavioural problem


3  CBT treats cancer and other physical illnesses - this is being disingenuous

CBT is sometimes used as part of the management of cancer, MS etc -  normally for people who are having difficulty coping with their illness.

It is not a primary form of treatment for serious long term medical conditions.

If a patient with cancer went to a cancer specialist and was just offered CBT as the primary form of treatment they would be horrified


4  The evidence for CBT in ME/CFS

Overall, the evidence is inconsistent, uncertain and weak.

Some research, often in highly selected patients with research defined CFS, and often carried out by CBT enthusiasts in psychiatric referral units, has indicated some people with CFS gain some benefit. 

But other research, including the most recent paper on group CBT, has found no real benefit.

Patient evidence that was submitted to Chief Medical Officer's report found that:

67% reported no change;       26% felt worse;       only 7 % felt better.



5  The NICE recommendations regarding CBT and GET are seriously flawed

The guidance states that everyone (ie around 200,000 people) with mild or moderate ME/CFS should be offered a course (ie 12 to 16 sessions) of CBT or GET by a properly trained therapist.

The cost of a session, including training the therapist, initial assessment, admin etc, is going to be around £100 - making a total cost of somewhere around £200 million.

Where is this money going to come from when existing ME/CFS services are being closed or are under threat, and when the government has indicated that there is no money available for new ME/CFS services.

And where are all the extra CBT and GET therapists going to come from?

Lord Layard, government economist, wants to create an army of newly trained nurses, psychologists and social workers to fill this gap.  These professionals all play a useful role but they cannot take over the basic management of a neurological illness.


6  Mind - Body is a two way street

Nobody would dispute that the mind and body interact and that people with serious long term illnesses can go on experience depression and emotional distress.

If these occur in ME/CFS, which they undoubtedly can, then they need to be addressed - but they are not the underlying cause of the illness.

BIOPSYCHOSOCIAL is a meaningless fence-sitting expression that ought to be drowned.  All illnesses (even the common cold or a broken leg) can have physical, social, and psychological components.

There are times when doctors have to come off the fence and decide whether an illness is basically psychological or physical.


7 What do people with ME/CFS really want?

Physician led centres providing multidisciplinary care and advice
Advice on all aspects of management - activity in particular - depending on stage and severity
Symptom relief: in particular pain, sleep disturbance, autonomic dysfunction
Help with other key aspects:  education, work, benefits


8  ME and CFS

The medical profession renamed and redefined ME in the late 1980s to create a wide spectrum of patients with differing clinical presentations and pathological explanations.

At one end of the CFS spectrum are those with chronic fatigue that is indistinguishable from a psychiatric illness.  At the other end are those with no psychopathology.

It's rather likesaying that everyone with arthritis - osteoarthritis, infective, lupus, psoriatic, rheumatoid etc - has the same symptoms and underlying pathology and so can be treated in the same way.  They don't and they can't.

No wonder we are in this awful mess.
--

Dr. Mary Schweitzer

Dr. White is disingenuous in his claim that he accepts both biological and
psychological explanations for the disease "CFS".  Disingenuous in that he
ignores almost all of the biological evidence except that which fits his
contention that behavioral conditioning (cognitive behavior therapy) together
with exercise can "cure" CFS.

He states that having EBV is a five-fold risk factor in getting CFS - yet all
of his work to date has demonstrated a belief that the virus itself has
RESOLVED by the time CFS sets in.  Hence the symptoms associated with "CFS"
(depending on which definition you use) are not caused by the virus; it is
learned behaviors over the course of the virus that create the symptoms
associated with CFS.  Cognitive behavior therapy cannot "cure" a virus; it
can only change behavior.
  If White believes these patients still have an
active, serious viral infection, how could he possibly propose "graded
exercise therapy"?

As a whole, proponents of the so-called "biopsychosocial" school of medicine
have taken no fewer than THREE good concepts and used them opportunistically
to do damage to patients, at the benefit of their own careers.

1 - The first is that concept of "bio-psycho-social" .  Any thinking person would
agree that in disease states, the entire environment is important.  Nursing school
teaches that.  Let's say I have cancer.  It would lead to a range of emotions
including despair.  The degree to which society helps my family or laughs
at my baldheadedness, or even treats cancer as a death sentence, would surely
impact the degree to which I could get relief from my serious biological illness,
and how I felt about myself.  That's how a concept with the label
bio-psycho-social should play out in real life.  They have used it instead to
squelch all the existing research on the biological causation of this disease. 

The concept of "somaticizing" in psychology has as its FIRST requirement that
there be no physiological cause for the symptom.
 
I would suggest that probably
means there should not be the POSSIBILITY of a physiological cause for the symptom.
Because of that, the habit of these radical psychiatrists of shielding the reader from
peer-reviewed published research about the physical nature of the disease is deceptive
at best - fraud at worst.  To disguise their philosophy under a name "bio-psycho-social"
that implies they are taking into account the biological evidence - when they are not
- is Orwellian new-speak of the worst order.

I have yet to see an article published on this subject that includes, for example,
Anthony Komaroff's survey of the biological literature from the Journal of American
Medicine in 2000.  Surely such an omission implies a desire to keep information
from the reader which might dispose the reader to look unfavorably upon the
author's own thesis - which is a violation of the most basic rules of scientific
research.

2 - The second concept they butcher is the mind-body continuum. 
People burdened with major mental illnesses such
as schizophrenia or manic depression have a biological basis to their illness,
although the illness presents itself as behavioral.  So the original complaints
about mind-body dualism were intended to get equal treatment for patients with
serious mental illnesses - get them treated like anybody else with a physical
illness.  Since these are lifelong illnesses just like diabetes, patients
with these illnesses fight for the right to life-long treatment when
most government and insurance programs limit the treatment to a fixed number of years.

To use THAT concept to DENY the physicality of an illness (and therefore not
only the biological remedies, but also the comfort that our society affords
patients with physical rather than psychiatric illnesses) and replace it with a
behavioral disorder is to completely reverse the purpose for which that debate
originally started.

3 - The THIRD concept they have butchered is the so-called "HPA Axis" damage in
patients with M.E./CFS-Fukuda.  I have read a number of these articles, and that
evidence boils down to the old studies by Stephen Straus and Mark Demitrack that
showed that patients with CFS-Holmes had LOWER than average levels of cortisol. 
That was a significant finding, because at the time both Straus and Demitrack
(at the U.S. NIH) were portraying "CFS" as a type of neurosis, or simply
depression.  But patients with major mood disorders have HIGHER than average
levels of cortisol.  So this evidence actually implied that whatever was wrong with
these patients, it was not primarily psychiatric
.

Furthermore, the scholarly literature on the impact of stress on patients
emphasizes that patients under a lot of stress have HIGHER than average levels
of cortisol - just like patients with major mood disorders - and the opposite of
patients with CFS-Holmes and CFS-Fukuda in those studies.

At first, those who claimed psychiatric (oh, my bad - BEHAVIOURAL) causation in
CFS buried that information in their studies. 

Then a new explanation surfaced.  AHA!  Here is the argument:  at some point
earlier in their lives, these patients had SO much trauma and SO much stress
that they blew out their HPA system (so to speak) and that is the reason they
now have lower-than-average cortisol levels, which boils down to an
under-responsive nervous system rather than an over-responsive nervous system
(their original narrative) and now they can claim they have biological studies that prove their point.   (and also ... hence, neurasthenia - a "weak" nervous system in the face
of "modern day stress.")

Now, nobody has found that, say Holocaust survivors have had higher-than-average rates of "CFS", or indeed that the adult victims of know child abuse have shown up
with higher-than-average rates of "CFS" - this is all theory, and it is all
retroactive.  Example: Using a questionable data set, Bill Reeves at CDC has claimed that 40 percent the patients with ""CFS" had some type of
trauma in their past - but I have seen studies that claim the rate of traumatic
incidence in childhood is at least that high among normals.  And to my knowledge
there was NEVER a study of the original cohort that proved this; Reeves used his
two-day hospital stay to draw this conclusion, and in that hospital stay only
SIX of the patients diagosed with CFS were part of the CFS cluster from the
original Wichita population study.  That is just a sample of the type of
research we are talking about here - strained, tortuous, and self-fulfilling.

White himself refers to the increase of cytokines as a possible cause for
the symptom of "fatigue".  Apparently it has not occurred to him that there may
be an immunological component to the illness because it is a disease primarily
characterized by immunological deficiencies
- and as a result the patients are
beseiged with illnesses such as HHV-6A or coxsackie viruses.  Conversely,
perhaps there is an increase of cytokines because the body is battling
an active infection for which there is, as yet, no accepted test.
Surely a patient experiencing an active infection is going to experience "fatigue" - if not utter exhaustion.
  In which case, that "fatigue" should be respected. 

By repositioning evidence of viral causation or viral infestation as actually a
type of fake bodily response - as if the increase in cytokines was not a sign of
a physiological disease in the normal sense of the term - White again abuses
evidence that would predispose most readers towards a disease in the usual
sense of the term.  He turns this evidence on its head to suggest that it actually
makes the brain behave inappropriately.  (If the patient were a victim of a serious
viral onslaught , the sensation of fatigue would not be inappropriate.) 
Then it becomes the job of the all-knowing physician to convince the patient
that he/she needs to change behaviors to get better (cognitive behaviour
therapy), followed by graded exercise therapy - which surely would be inappropriate
if the patient actually suffered from an ongoing, severe, viral infection.

When a scholar REVERSES ENGINES - that is, CHANGES THE THESIS TO FIT THE CONCLUSION, it is an egregious sin in research, and you better have a good
reason for doing it.  Having conveniently forgotten their original thesis, they
have never explained how they so conveniently turned the thesis on its head to
continue to keep their conclusion.

So - when White claims to be battling Cartesian mind-body dualism, he is in fact
confirming it by denying the scientific evidence of PHYSICAL abnormalities in
this disease, while insisting on a SOLELY BEHAVIOURAL model of
treatment.  "Cognitive behaviour therapy"- in case anybody has forgotten -
is a school of psychotherapy. 

--

Judith Decker

I do not regret the self-knowledge I gained from those years of
psychological explorations and treatments.  In fact, I appreciate them more
as each year passes.  However, they did absolutely nothing to alleviate the
symptoms or reocurrences of my debilitating physical relapses.

...medical science has treated allergies in the same way it has treated ME/CFS.  To
wit: They are neither glamorous nor money-makers, and are too frustrating
and time-consuming for most doctors.  So, the patient is left to "heal
thyself."

The only treatment that succeeds in eliminating the pyschological symptoms
is the exact same treatment that eliminates the corresponding physical
symptoms, which is to acknowledge and accept "all" of the symptoms for what
they are, i.e. a relapse of ME/CFS; then stop all physical/mental
activities, go to bed, or rest, and devote each waking moment to healing the
"whole" self.

May I respectfully suggest that it would be better for all mental
health practitioners to follow their oath to "Do no harm," by honestly
admitting that they can neither cure, nor treat, that which they do not
understand.
 


 

Sunday, November 11, 2007

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A film like this may be what it takes to convince your family and friends that you have a physical illness, not "laziness" or depression. 
Too many people don't understand that if "all tests are normal", it means the right tests weren't done. They simply assume that the correct tests were done and came up negative. But the standard first-round blood tests don't test for CFS or fibromyalgia.

There are tests that would identify some of the malfunctions in CFS/fibro, but those tests are not usually done. Some are very expensive, some rely on technology not available everywhere, and most are not known to anyone but dedicated CFS/fibro specialists.
If you can get the right tests done, there's no doubt that your CFS/fibro is a real, physical illness. Till then, DVDs like this one may be needed to convince people that you're not crazy or lazy, you're sick just like the people with MS who get pity from the same people who disparage CFS/fibro.