Saturday, September 20, 2008

CFS versus ME -- same? different? maybe?

There are some militant activists in the British Commonwealth who unequivocally declare that "CFS and ME are not the same thing." They’re half-right.

Some so-called experts, many of them British, have wrongly tried to apply the CFS label to psychologically-based Fatigue Syndrome, or to anyone who has the symptom of chronic fatigue from any cause, in order to dip their hands into the cookie jar of research funding, which they would not be eligible for as psychologists investigating a viral/neurological illness that has nothing to do with psychological or psychosomatic causes.

However, in the US, since 1988, it has been virtually impossible to get an ME diagnosis. Like Pluto was demoted from planetary status, ME was demoted entirely out of existence by CDC and replaced by CFS. Only a few doctors are radical enough to continue using the ME diagnosis in the face of CDC’s insistence that this disease must now be called CFS.

Dr. Elizabeth Dowsett observes "M.E. Research workers ... should first be directed to papers published before 1988, the time at which all specialized experience about poliomyelitis and associated infections seem to have vanished mysteriously!"

What happened in 1988 to cause the mysterious disappearance of valuable information? That’s right, CDC wiped ME off the books and replaced it with CFS, and in doing so, effectively erased decades of prior research and experience, by claiming that ME no longer existed and CFS was something else entirely. However, some doctors trained before 1988 recognized that CFS was just ME by a different name, and have kept that name alive – humoring CDC and insurance companies by calling it CFS when they fill out billing forms, but continuing to use the knowledge they had from when it was called ME, telling the patients that it used to be called Myalgic Encephalomyelitis or non-paralytic poliomyelitis, and keeping alive the connection that before the polio vaccine, ME and polio travelled in side-by-side epidemics, and those who got ME were later immune to polio – if that’s not a clue that this is not a purely psychiatric problem, I don’t know what is!

So, don’t let these activists mislead you. While CFS and ME may not always be the same thing in British English, they are the same thing in American English.

Under political pressure from Social Security and private disability insurers, CDC has now tried to also legislate CFS out of existence, by watering down the diagnostic criteria to the point that one of the Original CFS patients observes that those of us who were diagnosed with ME or post-viral syndrome before the name change, now don’t really fit the diagnostic criteria for the disease which was "created" based on the patients (such as he) who have Formerly-Known-As-ME. Like the man without a country, we are now patients without a disease, since we’re no longer allowed to call it ME, either.

In a classic case of The Emperor Has No Clothes, a number of CFS activists have noted that CDC’s information page about CFS specifically states that certain tests are not necessary for the diagnosis of CFS: all of them tests which should be abnormal in someone who has what we have, i.e., Original CFS. To cover up past dastardly deeds, they continue to spread misinformation about CFS, to the detriment of patients whose doctors rely on CDC providing accurate information.

If the only symptom you have is fatigue, you probably don’t have the CFS that used to be called ME. Take a deep breath, relax, and find a doctor who is willing to figure out the true source of your fatigue: it may well be something that can be fixed.

But if fatigue is the tip of the iceberg and you have a whole host of neurological complaints (see the complete symptom list – no, you don’t need to have them all – at ), then you can feel comfortable in reading information about both CFS and ME.

Doctors and Pain

There's a good NYTimes article on this website's front page about doctors' reluctance to prescribe painkillers.  (Locally on page A9 of today's Bee.)   The Times does not have a comment section on that page of their website; best you can do there is to e-mail the author.  If you do, cut/paste a copy to [email protected]
I've heard from a local pain management specialist that if you're in a specialty that deals with pain (e.g., rheumatology, neurology) it's highly unlikely that you'll get a visit from the DEA -- it's his impression that it's only PCPs who prescribe an unusual amount of pain pills (think Anna Nicole's doctor) who have anything to fear.  Unfortunately, this unreasonable fear of getting in trouble means more patients like me who will never work again entirely as a result of years of untreated pain and the resultant sleepless nights.
Whatever happened to "first, do no harm"?
I strongly believe that any doctor who refuses to prescribe necessary pain pills because he might have to answer a few questions from the DEA should have to answer a whole lot of questions from the Medical Ethics Committee.  Allowing patients to suffer needlessly should be punished as stringently as possible, and allowing a patient to become permanently disabled as a result of refusal to prescribe adequate pain medication should result in suspension of the doctor's medical license.
In my case, some of these were specialists who were diagnosing me with fibromyalgia, which is a non-inflammatory chronic pain condition, and anti-inflammatories like Advil (which is what I was told to take) are known to be useless.  There was no question in their minds about my diagnosis, and if they were holding themselves out to be specialists in fibromyalgia, they certainly should have known it's non-inflammatory pain and NSAIDs wouldn't help.  Therefore, there's no excuse for them continually telling me to take something that doesn't help in order to avoid their responsibility to prescribe something that does help. 
If they don't even know that much about fibromyalgia, then they have no business holding themselves out to be specialists qualified to treat it, and should be brought up on ethics charges for that, too. 
Clearly, if I had enough pain to qualify for the fibromyalgia diagnosis, I had enough pain to justify a prescription for pain medication to help me sleep, and they easily could have avoided any problems with the DEA with the simple explanation that they prescribed pain pills for a chronic pain condition which had been repeatedly diagnosed by multiple doctors.  They chose to protect themselves from any questions and sacrifice my health instead.  Anyone who's more concerned about themselves than their patients' well-being should not be practicing patient-oriented medicine: go hide in the lab where you won't have to deal with patients and their problems.

Friday, September 19, 2008


September is Chronic Pain Awareness Month, and for many CFS patients, it's more than words on an activism calendar.  After a few months with less pain due to the heat of summer, as the weather cools off, the chronic pain returns.

We're having an unseasonably cool September, already down to the sort of temperatures that we'd see in late November/early December, and with the sudden cool-down, I'm back to relying on heating pads, ThermaCare, pain pills, hot baths, etc., in hopes of getting comfortable enough to function.

There's been repeated research that chronic pain impairs memory function: it ties up so much of your brain's bandwidth that there's not enough left to form new memories.  In my case, it also impairs sleeping.  If I move a certain way, the pain jolts me awake, leaving me with a choice: do I take the sleeping pills that are strong enough to put me to sleep despite the pain, and then be too stoned to work the next day, or do I try to get by without the sleeping pills and try to do my work on 2-3 hours sleep?  I've finally reached a compromise where I take the sleeping pills on alternate days, and work on alternate days.  It's not ideal -- the doctors would like me to get 8 hours sleep EVERY night to achieve maximum healing, but then I couldn't work, couldn't run errands, couldn't do much of anything except lie in bed waiting for the effects to wear off.

This is a known problem with CFS ... it slows down your metabolism, which on the one hand causes you to gain weight, but on the other hand also affects how prescriptions are metabolized.  The first pill I was given to help me sleep, back in 1988, even one half of the smallest available pill knocked me out for 20 hours, and I was groggy the other 4.  We tried splitting it into ever-smaller fractions, but even the smallest piece we could cut still took 24 hours to metabolize out of my system completely; the joke was that perhaps the correct dosage was to just show me the pill bottle. 

The doctor recommended backing up the time I took the pill, well, there's a limit on how far you can do that -- if I took the pill as I left work at 5 PM, Vickey would have to make sure I got off the bus at the right stop and point me in the right direction for home, and I would just about make it in the front door before I fell asleep entirely.  If the bus had been late, Vickey would have had to drag me, fast asleep, the few feet to her apartment and call my husband to pick me up.

And the same thing applies with every sleeping pill that I've taken since then.  The ones that are strong enough to work are strong enough to prevent me from working, and there's a limit to how far I can back them up because then I fall asleep at inopportune times.  The ones I'm currently taking, I've found that 1/4 pill is not enough to put me to sleep.  A third works, but then I'm doped up for 18 hours.  Which means that if I wanted to take an office job requiring me to be functional at 9 AM, I would have to take the pill at 3 PM.  Which is fine, except that in a 9-5 job, you'll get fired for falling asleep at 3:15 PM.  But, if I take the pill at the time I used to get home from work when I worked downtown, I wouldn't be functional till noon, so I'd get fired for that, too.

The fact that I'm writing this at 3 AM my time (which will show up as 6 AM AOL's time when I post it) proves that it's not a figment of my imagination that I don't sleep.  One doctor condescendingly told me "sometimes we think we are awake when we are really asleep", but then refused to look at any of the evidence that proved I was actually reading books, knitting, writing e-mails, etc. at the times that I said I was awake.  I had tangible proof that I was awake till 5 or 6 AM every night for more than two years.

I've tried a completely dark, silent room (well, as dark and silent as you can get when you live in civilization with street lights, ambulances, freight trains, dogs next door, etc.), I've also tried a nightlight, and I've tried soft music, and I've tried the New Age CDs of ocean, babbling brook, waterfall, swamp frogs, gentle rain, you name it.  I've tried giving myself massages, I've tried the relaxation therapies where you relax your toes and then your feet and then your legs.  I've tried every non-prescription/herbal remedy, and none of them work for me.  In the last hour before going to bed tonight, I took a hot bath, had some warm milk, relaxed with a bit of stitching, and petted the cat, all of which are recommended to help you relax.  As soon as I laid down, the back spasms started, so I got up and put a ThermaCare wrap on trying to ease those.  And after an hour of tossing and turning, realized that I was getting frustrated -- I have important things to do tomorrow, which cannot be rescheduled, and therefore I can't sleep the day away -- and that frustration was not going to help me get to sleep, so I might as well get up and do something productive.

I don't need a special month to be aware of my chronic pain; I'm aware of it any time the temperature falls below 85.  If there's one reason I live where I do, it's because we spend a third of the year above 90 degrees, which minimizes the number of days I have to put up with the pain.

What I do need is a special month for OTHER people to be aware that CFS/fibro patients both suffer chronic pain, and that pain affects their lives in many ways.  Just because we have dragged ourselves out does not mean we are pain-free; when I run out of milk, I go to the store if there is any way at all possible for me to walk.  And just because we go to bed at a reasonable hour does not mean that we're sleeping -- in the last few weeks that I was working, I came home from work at 6 PM, immediately collapsed into bed or onto the couch (however far I had the energy to walk), but it was often 10-12 hours after I "went to bed" that I actually fell asleep; while I made the connection that I was not sleeping because I couldn't get comfortable due to pain, the doctors offered platitudes and simplistic suggestions (which I had long-since tried, because I know them all already), anything so that they wouldn't have to prescribe pain pills.  Since I had to get up an hour or two after I finally fell asleep in order to get to work on time, and couldn't nap at the office without getting in trouble, my "sleep hygiene" wasn't to blame: I wasn't sleeping in or taking naps, the problem was that going to bed at a reasonable hour and getting up at the same time every day is not enough when chronic pain is disrupting and preventing sleep.

The other night, I noted that I had spent 12 hours in bed, only 4 of it actually asleep, because it took till after dawn to become so exhausted that I fell asleep despite the pain that had kept me awake till then.  It didn't matter that I went to bed at a reasonable hour, not that night, not tonight, because chronic pain kept me awake despite my best efforts to fall asleep.

And that's something that everyone should be aware of.

Wednesday, September 17, 2008

From iVillage and NBC

Sick & Tired of Being Sick & Tired
Recognizing & Dealing with Chronic Fatigue Syndrome|09-17-2008| We all experience fatigue at times, but could you be one of the million-plus people with chronic fatigue syndrome? This condition, sometimes confused with fibromyalgia, is marked by profound weariness lasting at least six months, along with symptoms such as muscle pain, headaches and unrefreshing sleep. There's no known cure, but here are answers to your questions and ways you can cope with CFS.

Community Matters

YourTotalHealth's message boards have loads of information and insight on chronic fatigue, pain and more:

Tuesday, September 16, 2008

CFS Patients Needed for Interview

Seeking CFS Patients for On-Line Interview Concerning New Drug

A consulting company is conducting a research study for a
pharmaceutical company that has a new drug targeted at treating CFS
going through the FDA process. The company is seeking CFS patients to
participate in this study by completing a 10 to 15 minute on-line
interview.  You will be asked about  your CFS: how long you have had
CFS, how the disease has progressed, and what types of physicians you
have seen. You will also be asked about the medications that you now
take and how insurance companies handle your CFS related claims. You
will be given brief information about the new drug and asked for your
reaction to that information.  If you are interested in
participating, please call the data service (JRA) at
1-866-574-5549  Study Reference #1284 to see if you qualify
. If you
qualify, you will be compensated for completing the interview.  Your
participation will be completely anonymous.

Monday, September 15, 2008

Don't Suffer in Silence: FREE PAIN SEMINAR

Date:   September 14, 2008
Author: Orvie Prewitt and Ann J. Corley

As I see it: Don't suffer in silence - reach out for help

In late 2000 Congress enacted a provision declaring 2000-2010 as the 'Decade of
Pain Control and Research.' Yet despite the fact that an estimated 76.5 million
Americans report they have experienced chronic pain
- more than heart disease,
cancer or diabetes combined - pain remains woefully undertreated and
misunderstood. This is due, in part, to persisting misconceptions, fears and
stigma surrounding pain management.
It is not limited to one age, sex or ethnic group. Chances are you know someone
who lives with persistent pain - maybe it's you. Unfortunately, a vast majority
of those in pain believe that it is something they must bear. They are often made to feel that the pain is 'just in their heads.'

There is a high cost to this pain epidemic. Physiologically, it weakens the immune system and slows recovery from injury or disease. Psychologically, it can lead to depression and anxiety. Socially, it impairs almost every aspect of a person's life. Economically, pain costs our economy $100 billion annually in medical costs and lost productivity.

The reality is that the medical technology exists today to manage most pain, and
when pain is treated properly, many people can resume their lives. The challenge
is integrating that knowledge into practice. If you or someone close to you is
in persistent pain, it is important to confront the stigma that pain carries.

You have the right to have your pain properly assessed and treated. You stand
the best chance of making that happen when you take an active role in seeking
treatment and communicating very specifically about your pain and its impact on
your quality of life.

There is no better time than Pain Awareness Month to attend community events,
speak openly with health- care providers about pain levels, demand appropriate
access to treatment from insurance companies, and contact your Missouri and
Kansas legislators to ask their support of state and federal policy to help
people in pain.

Self-advocacy can also begin by reaching out to organizations such as the
American Pain Foundation or the National Chronic Fatigue Syndrome and
Fibromyalgia Association for information and support. Please join us next
Saturday for a daylong workshop designed to offer real solutions, presented
by health-care professionals, on how to improve your quality of life.

The workshop is free but registration is required. For more information,
call (816) 932-2351, ext. 2; or send e-mail to [email protected] .
Through your advocacy, the way we think about and treat pain will change for
the better.

Orvie Prewitt of Kansas City is president of the National Chronic Fatigue
Syndrome and Fibromyalgia Association. Ann J. Corley of Lee's Summit is the
Power Over Pain regional coordinator-Heartland for the American Pain Foundation.

* * *

Doctors will give you all sorts of excuses not to give you prescription pain pills ... most of which were debunked by a local pain management specialist who gave a similar seminar here a few years ago.

They'll tell you they don't want to turn you into an addict.  The fact is, less than 1% of patients become addicted to pain medication, and most of those can be identified in advance because they have addictive personalities.  Whether it's addiction to alcohol or computer games, a few questions will weed out those at risk. 

If the patient comes back asking for ever-higher doses, the assumption should be made that the previous dosage wasn't enough to control the pain, not that the patient has become addicted.  Further, one would never say that someone is "addicted" to insulin if they have to use it daily to be functional, so why is there the perception that patients are addicted to pain pills if they can't function without them?

I endured years of sleepless nights because Advil is for inflammatory pain and the pain of CFS/fibromyalgia is neurological ... I was being told to take something that wouldn't be expected to do me a bit of good, and in fact, all I got for the hundreds of dollars I spent on Advil was an ulcer.  When I finally got a very mild prescription intended to treat neurological pain, I went from sleeping 2 hours at a time to sleeping 5-6 hours at a time; when the pill wore off, the pain would wake me up.  But it's a lot easier to be functional the next day on 5 hours of sleep than on 2 hours of sleep.

Two Studies on Fibromyalgia

Self-Assessed Physical Function Levels Of Women With Fibromyalgia A National Survey.
Womens Health Issues. 2008 Aug 22. [Epub ahead of print]
Jones J, Rutledge DN, Jones KD, Matallana L, Rooks DS.
Health Sciences, California State University, Fullerton, California.
PMID: 18723374

OBJECTIVE: We sought to determine the self-reported physical function
level of women with fibromyalgia (FM).
METHODS: We performed a secondary analysis using data from an
Internet-based survey posted on the National Fibromyalgia Association
website. Data used for this study included women (n = 1,735) aged
31-78 years who reported being diagnosed with FM.
RESULTS: More than 25% of women reported having difficulty taking care of personal needs and bathing, and >60% reported difficulty
doing light household tasks, going up/down 1 flight of stairs,
walking (1/2) mile, and lifting or carrying 10 lbs. More than 90% of
women reported having difficulty doing heavy household tasks, lifting or carrying 25 lbs, and doing strenuous activities. Women with lower functional ability reported higher levels of fatigue, pain,
spasticity, depression, restless legs, balance problems, dizziness,
fear of falling, and bladder problems.
CONCLUSIONS: The average woman in this sample reported having less functional ability related to activities of daily living and instrumental activities of daily living than the average community-dwelling woman in her 80s. Several symptoms/conditions were
found to be associated with functional limitation in women with FM.
Targeting these-singly or in clusters-may potentially be important in
terms of future interventions.
Efficacy of Waon therapy for fibromyalgia.
Intern Med. 2008;47(16):1473-6. Epub 2008 Aug 15.
Matsushita K, Masuda A, Tei C.
The First Department of Internal Medicine, Kagoshima University Hospital.
PMID: 18703857

OBJECTIVE: Fibromyalgia syndrome (FMS) is a chronic syndrome
characterized by widespread pain with tenderness in specific areas.
We examined the applicability of Waon therapy (soothing warmth
therapy) as a new method of pain treatment in patients with FMS.
METHODS: Thirteen female FMS patients (mean age, 45.2+/-15.5 years
old; range, 25-75) who fulfilled the criteria of the American College
of Rheumatology participated in this study. Patients received Waon
therapy once per day for 2 or 5 days/week. The patients were placed
in the supine or sitting position in a far infrared-ray dry sauna
maintained at an even temperature of 60 degrees C for 15 minutes, and
then transferred to a room maintained at 26-27 degrees C where they
were covered with a blanket from the neck down to keep them warm for
30 minutes. Reductions in subjective pain and symptoms were
determined using the pain visual analog scale (VAS) and fibromyalgia
impact questionnaire (FIQ).
RESULTS: All patients experienced a significant reduction in pain by
about half after the first session of Waon therapy (11-70%), and the
effect of Waon therapy became stable (20-78%) after 10 treatments.
Pain VAS and FIQ symptom scores were significantly (p<0.01) decreased
after Waon therapy and remained low throughout the observation period.
CONCLUSION: Waon therapy is effective for the treatment of
fibromyalgia syndrome.
* * *
I can vouch for it that my 80-year-old mother is more functional than I am.  She can do more housework without collapsing, and she's steadier on her feet when going up and down the stairs.
Despite the perception that fibromyalgia is just a bunch of wimps whining about pain, it does have serious impact on patients' lives.  Unfortunately, although Social Services has told me that it's obvious that I require assistance, there's no program that they can place me in, because I'm not 65 and no judge has as yet determined me to be officially disabled.  If I want the help I need, I have to pay for it myself; my earnings are less than a minimum wage job, so obviously $200 a week for the only cleaning agency that actually cleans is more than I can afford.
What can you do to help?  Write your congressperson, senators, and the president, pointing out that In-Home Support Services are only available after someone is approved for disability benefits, which can be months or years after they apply (and the backlog of applications is getting longer).  Disabled people need help immediately on becoming disabled, not years later.  The law governing IHSS has to be changed to have applicants evaluated by Social Services as soon as the application is filed, and to allow services to be provided to those who need them immediately on filing the application.  It only costs a few hundred dollars a month to provide IHSS to keep someone like me in their own home, rather than $3000+ each month for a nursing home. (And the nursing homes have told me that they don't want someone like me tying up a bed: I don't need "nursing", I just need help with the cleaning.)

Functional Incapacity - References


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Functional Incapacity in CFS

        Vol. 41, #6, pp. 339-345

Functional incapacity and physical and psychological symptoms: how they
interconnect in Chronic Fatigue Syndrome
Stefan Priebe(a,*), Walid K.H. Fakhoury(a), Peter Henningsen(b)
a Unit for Social and Community Psychiatry, Barts' and the London School of
  Medicine, Queen Mary University of London, London, UK;
b Department of Psychosomatic Medicine, University of Munich, Munich, Germany
* Prof. Stefan Priebe, Unit for Social and Community Psychiatry, Newham Centre
  for Mental Health London E13 8SP (UK), Tel. +44 20 7540 4210, Fax +44 20
  7540 2976, E-Mail [email protected]  


It has been argued that perceived functional incapacity might be a primary
characteristic of chronic fatigue syndrome (CFS) and could be explained by
physical symptoms. If so, it could be expected to be closely associated with
physical, but not psychological symptoms. The study tests this hypothesis.

Sampling and Methods:
The sample consisted of 73 patients, with a diagnosis of CFS according to the
Oxford criteria, randomly selected from clinics in the Departments of
Immunology and Psychiatry at St. Bartholomew's Hospital, London. The degree
of fatigue experienced by patients was assessed using the Chalder Fatigue
Questionnaire and a visual analogue scale. Self-rated instruments were used
to measure physical and social functioning, quality of life, and physical and
psychological symptoms.

Principal-component analysis of all scale scores revealed 2 distinct
components, explaining 53% of the total variance. One component was
characterized by psychological symptoms and generic quality of life
indicators, whilst the other component was made up of physical symptoms,
social and physical functioning and indicators of fatigue.

The findings suggest that perceived functional incapacity is a primary characteristic of CFS, which is manifested and/or explained by physical symptoms.


Patients suffering from chronic fatigue syndrome (CFS) often report, along
with fatigue, symptoms such as pains in joints and muscles, headaches, sore
throat, lymph node tenderness, cognitive difficulties and sleep problems [1,
2]. CFS is commonly associated with anxiety and depression [3, 4] and usually
follows a chronic and fluctuating course, with an essentially unknown

Studies measuring different aspects of quality of life and functioning [5, 6]
have demonstrated that quality of life is severely disrupted in CFS patients.
In the vast majority of these patients, the functional impairment is severe
and long lasting, with rates of recovery of only 3-19% [6, 7]. Low social and
physical functioning may reflect a perceived incapacity that is central to
the experience and symptomatology of CFS patients. The question is whether or
not this incapacity is a consequence of other symptoms or a primary and
defining feature of CFS [8, 9]. It has indeed been argued that a perceived
incapacity in fulfilling social roles - or the anticipation of such an
incapacity - may be a primary characteristic of CFS, and the symptoms usually
reported might have a function to justify this perceived incapacity [3]. Such
a justification could be understood in the context of prevailing, socially
and culturally determined illness paradigms, and also of the struggle to
recognize CFS as a legitimate disease. However, it is possible that the
illness itself mediates functional incapacity primarily through physical
symptoms. If it were a secondary phenomenon and a consequence of other
symptoms, it could be assumed that the level of perceived incapacity would be
positively associated with the severity of all psychological and physical
symptoms of CFS. As a primary feature, however, it may neither be socially
acceptable nor fit into existing medical classifications. Patients might
explain or articulate their incapacity in terms of more conventional
symptoms, responding in part to prevailing social or medical norms. As
social and physical incapacity appears closer to physical than psychological
symptoms, and physical symptoms may be regarded as socially less stigmatizing
than psychological impairment, one may hypothesize that functional incapacity
should be associated with physical, but not necessarily psychological

The results of Hardt et al. [10] are consistent with this assumption. They
assessed the internal factor pattern of health-related incapacity in CFS
patients from three countries with the General Health Survey (Medical Outcome
Survey) Short Form 36 (SF-36) and found an 'unusual profile'. In the most
common 2-component structure of the SF-36 found in different patient
groups, social functioning and vitality load together with the emotional
subscales on a 'mental' component, whilst physical role fulfilment and
functioning, pain and general health perception load on a 'physical'
component. Social functioning and vitality, a measure of non-fatigue, were
associated with the physical components; emotional well-being and emotional
role functioning were the only subscales that loaded on a different factor
than the other 6 [10].

To our knowledge, there have been no studies so far that try to unravel the
structural relations between different aspects of functional incapacity and
various physical and psychological symptoms in CFS patients. We studied a
sample of secondary/tertiary-care patients with CFS to address the following
question: how are indicators of perceived functional incapacity associated
with physical and psychological symptoms? We hypothesized that the level of
perceived incapacity would be associated with the severity of physical rather
than psychological symptoms.


A random sample of patients, with a diagnosis of CFS attending clinics in the
Departments of Immunology and Psychiatry at St. Bartholomew's Hospital,
London, were approached to take part in the study. Patients attending these
clinics were selected using random number tables so that between 2 and 4
patients were approached each week, a number chosen to give a manageable
number of subjects for the study every week. Thirty-seven of 146 patients
approached in the immunology clinic (response rate 25.3%) and 36 of 50
patients (response rate 72%) approached in the psychiatry clinic participated
in the study (response rate 37.2%, i.e. 73/196). Members of the research team
interviewed the patients to obtain informed consent and to ensure they met
Oxford criteria for CFS [1]. Patients were excluded if they were unable to
complete the questionnaires for reasons of either language or severe
disability. Data were collected from medical notes and using a questionnaire
designed specifically for the study.

The patients from the two clinics did not statistically significantly differ
in terms of their sociodemographic characteristics (age, ethnicity,
sexuality, marital status, previous education, employment, number of
children, having close friends or receipt of benefits). They did not
statistically significantly differ in their specific symptoms, disability,
quality of life, psychological distress and previous attendance to mental
health professionals either. Therefore, there was no reason for not treating
them as one sample in the analyses. The comparisons of patient
characteristics between the two settings and the sample characteristics are
described in detail in White et al. [11] and Rakib et al. [12].

The degree of fatigue experienced by patients was assessed using the Chalder
Fatigue Questionnaire [13] and a visual analogue scale [14]. The Chalder
Fatigue Questionnaire (11-item scale) assesses the degree of physical and
mental fatigue in the last month. The respondent rates each item on a
categorical 0, 0, 1, 1 point scale.

Several instruments were used to measure physical and psychological symptoms
and aspects of functioning and quality of life. The Symptom Checklist 90
Revised (SCL-90-R) [15] has 90 items of which 83 are grouped into 9 primary
symptom dimensions: somatization, obsessive-compulsive behaviour,
interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety,
paranoid ideation and psychoticism. The remaining 7 items are used in the
calculation of global scores. The Spielberger Trait Anxiety Questionnaire
[16] has 20 items that measure trait anxiety (how one generally feels). Items
are rated on a 4-point Likert rating scale, ranging from 1 (almost never) to
4 (almost always). Scores on the Spielberger Trait Anxiety Questionnaire
range from a minimum of 20 to a maximum of 80. The Health Anxiety
Questionnaire [17] is a 21-item scale that measures worry and preoccupation
about health, fear of illness and death, reassurance-seeking behaviour and
interference with life. Items are rated on a 4-point Likert scale, ranging
from 1 (not at all/rarely) to 4 (most of the time), with scores therefore
varying between 21 and 84. The Somatic Discomfort Questionnaire (SDQ) [18]
has 50 items that assess how bothering symptoms have been in the past week.
Each symptom is rated on a 4-point Likert scale, ranging from 1 (not at all
bothersome) to 4 (a lot bothersome). Scores on the SDQ range from 50 to 200.
The Beck Hopelessness Scale [19] has 20 true-false items that measure 3 major
aspects of hopelessness: feelings about the future, loss of motivation and
expectations. Items are rated 1 if true and 2 if false, with scores ranging
from a minimum of 20 to a maximum of 40.

The Medical Outcome Study SF-36 [20] was used as a self-report questionnaire
to assess perceived incapacity based on physical functioning, social
functioning, pain, mental health, role limitations due to physical problems,
role limitations due to emotional problems, vitality and general health
perception. The social and physical functioning subscales were regarded as
indicators of functioning and incapacity in this study.

The Manchester Short Assessment of Quality of Life (MANSA) [21] was used to
assess generic quality of life. The MANSA contains 16 questions of which 4
are termed objective and the rest are ratings of satisfaction with life as a
whole and the following life domains: leisure activities, financial
situation, living situation, personal safety, social relations, mental health
and family relationship. As far as psychometric properties are concerned,
results of the MANSA have been found to have high concordance with results of
the much longer Lancashire Quality of Life Profile [22]. The mean score of
satisfaction ratings was used as an indicator of generic subjective quality
of life.

The data were analysed using SPSS for Windows version 11. The hypothesis was
tested in a multivariate analysis to reduce the probability of type I error
and consider all different symptoms and aspects of incapacity in one
analysis. For this, principal-component analysis (PCA) was used. The
Kaiser-Meyer-Olkin measure of sampling adequacy was conducted to ensure there
was adequate and high variability in the data (values greater than 0.5 for
the Kaiser-Meyer-Olkin measure indicate that the data could be subjected to
PCA). Bartlett's test of sphericity was conducted to ensure that the
different instruments were sufficiently correlated. PCA with rotation of
component(s) was conducted, and several rotations were tried in order to
identify the solution that would provide meaningful and distinct components.
Data on the rotated solutions are only presented for the best solution. As
the analysis is exploratory, the best solution was chosen based on the
eigenvalues (explained variances extracted by the factors) and the
meaningfulness of the components extracted. Only cases with valid values on
all variables subjected to PCA were included in the analysis.


Sum Scores of Various Subjective Measures
Table 1 shows the sum scores of the administered instruments.

Appropriateness of the Data
The Kaiser-Meyer-Olkin measure was 0.84, suggesting sufficient and high
variability in the data to conduct PCA. The results of Bartlett's test of
sphericity (approxi- mate chi^2=1,169.6, d.f.=276, p<0.0001) suggested
that the scales were sufficiently correlated to perform PCA.

Tables 2 and 3 show the correlations between the sum scores of various
subjective measures.

Component Solution
When all the scales were subjected to PCA, the analysis resulted in a
solution with 5 components with eigenvalues greater than 1. Component 1 had
an eigenvalue of 9.9 (41.3% of the variance). Component 2 had an eigenvalue
of 2.8 (11.7% of the variance). Components 3, 4 and 5 had eigenvalues of 1.5,
1.1 and 1.0, respectively (15.4% of the variance). However, most of the
scales loaded heavily on components 1 and 2. None of the scales had their
highest loading in either component 3 or 5. The Chalder Fatigue Scale was the
only scale that loaded the highest on component 4 as compared to its loading
on the other components. The other chronic fatigue measure, the Fatigue
Visual Analogue Scale, loaded the highest on component 1. Given that
components 3, 4 and 5 had much lower eigenvalues than components 1 and 2, and
had almost no high loading scales in them, it was decided to choose a
2-component solution.

Table 4 shows the loadings of the various items in the rotated 2-component

The quartimax rotation was found to provide the most meaningful solution. In
this solution, component 1 comprised 14 variables and had an eigenvalue of
7.9 (32.9% of the variance). It had positive loadings of the SCL-90-R
subscales depression, anxiety, obsessive-compulsive symptoms, psychoticism,
hostility, phobic anxiety, interpersonal sensitivity, paranoid ideation, the
Spielberger Trait Anxiety Questionnaire, Health Anxiety Questionnaire and
Beck Hopelessness Scale, and negative loadings of the SF-36 subscales of
mental health and emotional role fulfilling. Component 2 consisted of 10
scales and had an eigenvalue of 4.8 (20.1% of the variance). Component 2 was
made up of the following scales with positive loadings: the SF-36 subscales
of social functioning, general health, vitality, role ­ physical, and
physical functioning. The Fatigue Visual Analogue Scale, SCL-90-R subscale
somatization, SDQ and SF-36 subscale bodily pain loaded negatively on this
component. The Chalder Fatigue Questionnaire also loaded negatively on this
component, but the loading was less than 0.5. The first component captures
psychological aspects, the second one physical phenomena. The total variance
explained by the 2 components was 53.0%.


This study investigated the association between self-ratings of incapacity
and quality of life and various physical and psychological symptoms in CFS
patients. Our study is different from other studies in this area [23, 24]
because it focused on symptom patterns, while taking into account data on
quality of life and aspects of functioning. The PCA yielded a satisfactory
2-component solution that explained 53% of the variance. The 2 components
reflect a physical and a psychological side of CFS, and reveal that generic
subjective quality of life and functional incapacity are not homogeneously
associated with symptoms of CFS.

The perceived incapacity in fulfilling social and physical roles may be best
captured by the subscales of the SF-36 on social and physical functioning.
The scores on these subscales are associated with vitality and inversely with
one of the defining symptoms of CFS, i.e. fatigue (Chalder Fatigue Scale,
Fatigue Visual Analogue Scale). They CFQ are also associated with other
physical symptoms (SDQ, SCL-90-R subscale 'somatization'), but not with
psychological symptoms such as depression (Beck Hopelessness Scale, SCL-90-R
subscale 'depression') and anxiety (Spielberger Trait Anxiety Questionnaire,
SCL-90-R subscale 'anxiety'). These psychological symptoms are linked to a
generic measure of quality of life (MANSA), reflecting satisfaction with life
in general and life domains, and to emotional role functioning and mental
health (SF-36, subscale).

These findings demonstrate that there are clinically meaningful patterns to
be found beyond the general statement that functioning and quality of life
are severely disrupted in CFS patients. Perceived incapacity, not only on the
physical, but also on the social level of functioning, is particularly
associated with fatigue [25], vitality and other physical symptoms, whilst
deficits in generic quality of life have a strong association with
psychological symptoms. The latter association between generic subjective
quality of life and general psychopathological symptoms, particularly mood
symptoms, is in line with results from other studies.

The identified pattern is consistent with the hypothesis that a perceived
incapacity in social and physical functioning is linked to the severity of
physical rather than psychological symptoms [3]. It also corresponds exactly
with the distribution of subscales of the SF-36 between the 2 identified
components, the 'unusual profile' that Hardt et al. [10] described without
interpreting it further.

One interpretation of our findings rests on the assumption that attributive
processes of the patients influence the pattern of reported symptoms and
their association with both functional incapacity as well as generic quality
of life. There is some evidence supporting this assumption. For instance,
Moss-Morris and Petrie [8] examined cognitive behavioural styles that
differentiated depressive disorders and CFS among 73 patients. For different
levels of depressive symptoms, but equivalent levels of energy loss and
disability, they found a highly significant preponderance of psychological
attributions in the pure depressed and of physical attributions in the pure
CFS group. They conclude that CFS and depression can be distinguished by
unique cognitive styles characteristic of each condition
, and CFS is a
disorder notable for the patients' emphasis of an organic causal attribution.

The results suggest that CFS patients perceive their general quality of life
more in tune with their current mood than their fatigue, whereas their
functioning is more related to physical symptoms and fatigue, as the defining
symptom of the illness. Thus, functional incapacity might be understood as a
primary characteristic of CFS that is manifested and possibly explained by
physical symptoms. Cultural and social factors can evidently influence the
expression of illness by symptoms. Alternatively however, the nature of this
illness could itself cause functional incapacity primarily through physical
symptoms, with psychological symptoms having a limited impact on incapacity,
although influencing quality of life; this would negate one of our stated
assumptions. If so, this may relate to the nature of the distinctive
experience underlying the use of the word fatigue in CFS. The direction of
causality and the role of attributions have not been assessed in this study.
Clinically, one may conclude that fatigue and physical symptoms need
attention to reduce perceived incapacity and to improve functioning, whilst
psychological and mood symptoms may require treatment to influence subjective
quality of life.

Our study has several methodological limitations. We used PCA which is based
on correlations between variables found in a cross-sectional assessment. The
findings do therefore not allow a conclusion on causal relationships. Also,
the findings of the multivariate analysis depend on the selection and
specificity of the scales that were chosen to capture functional incapacity
and different types of symptoms. Most of the scales we used had been
originally developed and validated for patient groups with disorders other
than CFS. Although we regarded the instruments used as the most appropriate
ones for the study, one might question their validity for the specific
purpose. Moreover, the selection of psychological and physical variables
tested for their associations with key features of CFS and with functioning
and quality of life may be seen as unbalanced, because the majority of
physical symptoms that were assessed was measured on only 2 scales, the
somatization subscale of the SF-36 and the SDQ. However, both subscales
comprise items on physical symptoms like pain and muscular soreness that have
been suggested to be specific for CFS on the one hand and correlate closely
with other non-pain physical symptoms on the other. Thus, it may be argued
that the sum scores of physical complaints used in our study reliably reflect
single scores for more specific symptoms.

In further research, qualitative methods and longitudinal designs may be
required toassess the patients' experiences and their views of symptoms,
functional incapacity and quality of life in more depth and to understand
better the components and also the underlying mechanisms of illness and of
attribution. It should also be possible to identify factors that influence
these over time, with or without interventions.

To conclude, this paper has focused on a significant issue relating to
investigating whether perceived functional incapacity is linked to physical
or psychological symptoms in CFS. The uniqueness of the analyses stems from
the fact that they used a comprehensive set of criteria to unravel the
structural relations between different aspects of functional incapacity and
various physical and psychological symptoms in CFS patients. Our finding that
there are distinct 'physical' and 'psychological' factors inherent in CFS is
new - and specific - to the CFS literature. Although patients were recruited
from two different settings, there were no statistically significant
differences in their sociodemographic, clinical and service use
characteristics, thus reducing significantly the possibility of bias that
could have resulted from combining the two in one analysis. However, the data
were collected in secondary/tertiary care, and the results may not be
generalizable to patients in primary care and community settings. Finally,
the design was cross-sectional; therefore, the correlations do not indicate
causal relationships.


The authors would like to thank Prof. Peter White, Prof. Anthony Pinching and
Dr. Barbara Hedge for their contribution to the design, organization and
management of the study, and Dr. Abdur Rakib for his contribution to data

Sunday, September 14, 2008

Action for ME employment survey

From   Action for ME (AfME)
"Nearly everyone knows someone who has ME. They may even know someone who is
so badly affected that they have lost their job and have to live on
benefits. Believe me, for these sufferers this is not a career choice.  Without exception, people with ME are desperate to get well and live normal lives.

The benefits shake-up recently proposed by the government has serious and
far-reaching implications for vulnerable people such as those affected by
this chronic  fluctuating illness.

It promises fairness for disabled people in what is a barely disguised
attempt to cut the benefits bill by forcing people back to work before they
are well enough. What next - will we be expected to send our old and sick to
the workhouse?

Action for ME is urging everyone with ME and their carers to take part in
the public consultation on the proposals by completing the survey on our

The survey asks important questions about people's health, their
experiences of the existing benefits system, their hopes and the strategies
they have used to try to get back to work.

We will use the results to lobby Government. The Prime Minister must not be
allowed to reduce his benefits Bill at the cost of ruining the health of
genuine claimants.

Peter Spencer
Chief executive
Action for ME"

* * *

On the last page of the survey it asks where in the UK you live, but I was able to submit my results without answering that question, since I don't live in the UK, so don't abandon the survey when you get to that point!

The experts say that a CFS patient should not try to go back to work until he/she is at least 80% recovered, and then only part-time.

Some of us were still trying desperately to work when we were only 10% functional.  It's a terrible insult to be accused of goofing off to collect disability benefits after trying so hard to remain employed!

I don't know what the benefit amounts are in the UK, but here in the US, even the top SSDI benefits are about as much as a minimum wage paycheck.  If your marriage went down the tubes as your health failed and you're trying to make it on your own, you can't.  When I first got sick in 1987, one of my colleagues had just returned from maternity leave: her disability check for that time period was exactly equal to my rent, nothing left over for food/utilities/transportation/prescriptions.  And mine was not a luxury apartment: it was 1 bedroom, no pool, no patio, no A/C, no dishwasher, the only amenity was on-site laundry room.

Anyone who thinks that people go on disability for kicks is sick in the head.  A friend who was a RN gets just $648 a month.  You try living on that! 

CFS and Anesthesia -- PRINT FOR YOUR DOCTOR!

The  National CFIDS Foundation, Inc. and the National Institutes of Health
(NIH)  have both funded research led by Dr. Yoshitsugi Hokama, Pathologist,
with  the University of Hawaii.  Science has suggested that the adverse
effects  of anesthesia, in those with CFIDS/CFS/ME, are likely to be
to  sodium channel activation.  This would be true for all diseases that test
positive for the ciguatera epitope, an assay offered by the John A. Burns
School  of Medicine at the University of Hawaii.  Furthermore, this test has
been found to be a marker for autoimmune disease.  The National CFIDS
Foundation has funded additional research to determine the exact
associated with this sodium channel activation.

Since the ciguatera  epitope causes sodium channel activation and since many
anesthetics utilize the  sodium channel as part of their pharmacologic
of action, it is  suggested that precautions be taken to avoid anesthetics
that activate the  sodium channel so as to avoid potential adverse reactions.

The anesthesia  protocol can be found on our website at  by
first selecting  "resources" and then selecting "patient/physician info."
For your own  health,  please print this out for yourself today.

Gail Kansky
President, National CFIDS Foundation, Inc.
103 Aletha Rd.
Needham, MA 02492-3931

Useful Links for CFS Patients

The CFS Facts website is currently off line, but we are working on regaining control of our URL and reinstating the website with a new hosting company.

Meanwhile, you can always come here for information dispelling the myths and providing the facts.


The CFCCC Resource Guide is Now On-Line!

The CFCCC Resource Guide  has been
updated and is now on-line thanks to our partnership with DePaul's Chronic
Illness Initiative on an AT&T grant.

It ain't been made all pretty, but it has loads of resource information on
everything from CFS/Fibro/MCS-aware Doctors, Lawyers and Acupuncturists, to
places to buy affordable gifts, to a veterinarian who makes house calls, to
housing resources, to ... actually, there's too much to list!

Just click on the Resource Guide  link
and take a look around -- you are sure to find something useful and
unexpected, pleasant surprises.

Help us make the Resource Guide (and other services) even better
Memberships, donations, and grants not only make efforts like the CFCCC
Resource Guide possible -- it is the large (and unfortunately growing)
community of CFS/Fibro/MCS sufferers and supportive family, friends, and
co-workers that make the effort worthwhile.

Joining and donating to CFCCC  will help us
do more, and do it better.

CFCCC is a registered 501(c)(3) not-for-profit organization, so remember
your tax-deductible donations at tax time!


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