Coping with Limitations

There’s a new movie “The Diving Bell and the Butterfly”.  CNN says:
       "Jean-Dominique Bauby was a 43-year-old editor of French fashion magazine Elle, a success and a playboy before a sudden stroke left him immobile and without speech in what's called "locked-in syndrome." Instead of allowing it to defeat him, he wrote a best-selling memoir by blinking out the letters, one by one.  "He traded his body, essentially, in order to be a great artist," says Schnabel.
       In Bauby's memoir, published just two days before his death at 44, Bauby calls his submerged state the "diving bell."  He writes: "My diving bell becomes less oppressive, and my mind takes flight like a butterfly. There is so much to do. You can wander off in space or in time, set off for Tierra del Fuego, or for King Midas' Court."
       For the movie version of these "bedridden travel notes," Schnabel -- who rose to fame in the '80s as a painter -- also decided to take flight.
       Many who have had a stroke or been badly ill have approached Schnabel to thank him for the movie, he says."

 

That’s a trick I learned when I was a kid having bronchitis 6 weeks every other year.  I could lose an afternoon by inserting myself into some favored movie or book, or mentally playing on the beach.  Since I like watching figure skating, I could listen to music with my eyes closed and create choreography for a couple hours.  When shrinks think I’ve got to have a couple screws loose for not getting depressed with CFS, they don’t realize that I don’t live with CFS 24/7 – there’s a perfectly healthy me walking on the beach somewhere.  I’m only disabled when I get up and try to do something.  (It was a real blow a couple years ago when I started being disabled in my dreams, too.  As long as I was still healthy while I was dreaming, life was bearable even at my worst, but when it intruded in the middle of the night, there was no escape.)

 

Maybe having a movie about it will help other patients learn to cope the same way.

Tags: CFS, fibromyalgia, coping, limitations, homebound, bedbound

More Snake Oil Salespeople Preying on Desperate Patients

Thanks to Tom Kindlon for spotting this one about the Lightning Process
(Link below my signature) and, understandably, thinking he was in the Ads
section.

My response here. If you would like to try to help get a few landing on the
Letters Editor's desk, the e-mail address is citizen.letters@glosmedia.co.uk

Cheers
John

Gloucester Citizen Letters.

Long-term M.E. (Myalgic Encephalomyelitis) sufferers will have noticed that
Clare Hudman's diagnosis (Clare's found a way out of ME, Gloucester Citizen,
29 November 2007 ) changed by three tottering stepping stones from
Post-viral Fatigue Syndrome, to Chronic Fatigue Syndrome, to M.E. If anyone
thinks these are the same, why do they give them different names? They are
not synonymous or interchangeable. M.E. is a discrete neurological illness,
as recognised by the World Health Organisation.

They are different. There may be a clue in the numbers. No one is sure but
the 150,000 figure given here is widely agreed for M.E. sufferers. It's when
you call it CFS/M.E. that the range almost doubles to 240,000. If you were
to add TATT (tired all the time) it would increase to millions. M.E. is
certainly not fatigue as we usually understand it, nor does it respond to
the treatment that usually works - and is natural and free - sleep. This is
not to belittle chronic fatigue; it is very debilitating thing to have but
it is to make the distinction between it and M.E.

Whether Clare actually had M.E. or not, her story is the latest in a
worrying trend of articles promoting a kind of pyramid healing process, in
the same way that some people buy into a hyped miracle product that often
piles up in their garage unless they can sell it on to the next in the
chain, to pay off the investment, in this case, a four-figure training sum.

The story goes - just like Clare's - that they had tried everything and
never thought they'd be well again. A friend told them of a radical
treatment like the Lightning Process (there are others with similar
extravagant claims). They were sceptical but felt they had nothing to lose.
They tried it and were amazed and thrilled at the dramatic change in their
lives. Now they have trained to offer it to others. Like most stories that
seem too good to be true, it is.

Each radical treatment appears like a panacea for all ills from the lengthy
list of illnesses it claims to help. The founders admit, on their own
websites, that there is no scientific validation. Recommendations are based
on favourable testimonials but there is not, for balance, a section for
people who were dissatisfied that the treatment did not help them and who
may not be able to speak out because they are too ill, or fear some
consequences if they do. Treatments are given by people with questionable
qualifications - What on earth is an "personal development expert"? - who
teach each other, passing on the bills for training to the patient at the
end of the line. Average cost is about £80 a session which is as much as
most M.E. sufferers, on benefits, have for everything in a week. Now they
find they did have something to lose - several hundred pounds which could
buy some essentials for the patient who needs them, rather than some
luxuries for the therapist who doesn't.

Worst of all, these radical treatments offer false hope that is never
realised for M.E. sufferers. This organisation, together with other M.E.
support groups, believes that it is better to have no treatment at all than
one that leaves you with no lasting benefit or, like Graded Exercise
Treatment (GET), may even do irrecoverable harm to some and advises that
they are avoided until trustworthy research comes up with the physical cause
of M.E. which should in turn suggest an appropriate treatment on which they
can rely.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

http://tinyurl.com/2ufpbz  i.e

http://www.thisisgloucestershire.co.uk/displayNode.jsp?nodeId=231771&command
=displayContent&sourceNode=231773&contentPK=19103664&folderPk=108571&pNodeId
=231887

Clare's found a way out of ME


09:00 - 29 November 2007

There have been days when ME sufferer Clare Hudman spent 23 hours out of the
24 in bed.For seven years, the Stroud mum, struggled with the constraints of
her illness before stumbling on a course which changed her life.

Today, Clare, 49, is healthy and energetic and has retrained so that she can
help others rebuild their lives.

Clare, of Springhill, was diagnosed with Post-viral Fatigue Syndrome in her
early 40s, when her daughter was just five.

This condition is also known as Chronic Fatigue Syndrome or ME (myalgic
encephalomyelitis), which is recognised by the World Health Organisation as
condition characterised by long-term tiredness and other symptoms.

It is estimated 150,000 people in the UK have the condition.

Clare's illness began with a bad bout of flu followed by repeated infections
and although she expected to make a recovery, she never did.

"I ended up in bed 23 hours out of 24. I was unable to listen to the radio
and unable to read."

She always suffered from terrible tiredness and lack of energy.

"I learnt to manage my life around ME. I had to rest for three hours before
going out. I would wake up in the morning and wonder if I had the energy to
go into town - a five minute walk," she said.

Stairs were a problem so Clare would make sure she would take everything she
needed for the day downstairs in the morning.

After seven years of living with the condition, Clare had almost given up
hope, when a GP friend told her about the Lightning Process, which is not a
therapy but a training programme for thought processes. She travelled to
Wales in June 2006 to train

The Lightning Process involves physical and verbal exercises and a
combination of osteopathy, neurolinguistic programming (NLP), self-hypnosis
and life coaching.

The aim is to change thought processes which cause stress reactions in the
body.

Immediately after the three-day course, Clare went camping with her family.

The transformation in her health was dramatic. She was enjoying cliff top
walks and body surfing.

She was so delighted to have regained her energy, and indeed her life, that
after a year's study, she has now become qualified to teach the Lightning
Process.

"I started out feeling that there was no hope, then I learnt how to get
myself better, and now I'm able to teach other people and see them getting
better.

She said the process is not a cure but a tool for recovery which can have
dramatic effects on physical health.

"It's a training course to give you the tools to change yourlife and get a
life you love. I'm happier now than I can ever remember being."

* * *

[As a side note, in the US, it has been essentially impossible to get a diagnosis of ME since the term CFS was created in 1988, unlike the UK where ME is regularly diagnosed.]

If you are cured of your problems by "changing thought patterns", then you don't have the virus required for a True CFS diagnosis.  Viruses respond to medication, they cannot be talked away or thought away.  Those of us who have The Real Thing can think happy thoughts all we like, but it won't reduce the viral load to zero.

The difference is those "and other symptoms".  Someone with chronic fatigue (the symptom, not the Syndrome) won't have the same other symptoms as someone with CFS (or ME, if you prefer).  And someone with TATT (Tired All The Time) can be cured with a week of relaxing on a beach.  If all your problems are fixed by sleep, you don't have what we're talking about when we say CFS.  (Although, if you have CFS, some of your problems will be reduced by improving the quality/quantity of your sleep enough to let your immune system recharge.)

There are many snake oil salesmen out there eager to separate you from your money.  Read their websites carefully.  I was directed to one who had less than a 25% success rate; not something I wanted to gamble my last $10,000 on.  Since developing CFS, I have a lot of allergies; his office would not even tell me whether there was anything in his Magic Pills that would set off my allergies unless I spent the $2000 for a first appointment; imagine that, paying $2000 just to be told "you can't take this".  There's only one person who'd benefit from that arrangement, and it's not me.  That was a red flag.  Just as the only "lightning" most patients will find from Lightning Process is a lightening of their wallets.

The fact is, some CFS patients have "spontaneous remission".  It happens whether you're being treated or not.  If it happens when you're trying one of these snake oils, you may think it was the Magic Pills that cured you when it was actually just coincidence.  My trick when I'm trying something new that seems to help is to stop after a month or so, and do without for a couple weeks to see if I backslide without it.  Then I re-start and see whether I feel better.  If I don't get another bounce when I re-start, then maybe the improvement was just coincidence.

And let's address another issue which is sometimes debated in trying to differentiate ME from CFS: fatigue.  Some people believe that fatigue is not part of ME, and others point to writings from the 1930s (before there was CFS) that say it is.  It's my experience that you can have ME/CFS without fatigue if you stay well within your limits; when I was still trying to do everything that needed doing around the house, I was constantly exhausted.  When I took up Dr. Goudsmit's recommendations of pacing, which involve resting before you reach the point of collapse, even if all the tasks on your list aren't done, the exhaustion wasn't as big a problem.  The house is a bigger mess, but I feel better.  Since no one ever comes over to visit, there's no reason for me to kill myself keeping the house spotless the way I used to.  If it's something that's going to be used again soon, I don't waste the energy putting it away.  The Christmas tree gets put back in the box fully decorated; instead of needing to find an hour of energy to set it back up, I just need two seconds to pull it out of the box and fluff the branches.

When I decide that feeling better means that I'm getting well, and set out to do more than my limit, I have problems with exhaustion again.

But, for the most part, at this point, because I'm honoring my known limits, I don't feel exhausted any more.  That's worth a messy house any day.

 

Tags: fraud, treatment, CFS, CFS/ME, ME/CFS,

Other Fibro Blogs

*:Tips living with fibro..

livinglifewithfibromyalgia.blogspot.com

 

*:Tips dealing with families & fibro..

fibromyalgiatips.googlepages.com

Medication errors harm at least 1.5 million people annually

5 ways to avoid medication mistakes - CNN.com

 

He feared his wife was about to get two doses of the same medicine. "I told the nurse, and she said, 'Oh dear. We'll check that,' " says Wu, a professor at Johns Hopkins School of Public Health. "Had I not been there to intercept the error, she would have gotten both doses."

Medication errors harm at least 1.5 million people every year, according to the Institute of Medicine. In hospitals, there is at least one medication error per patient per day, according to an IOM report last year.

Outside the hospital, the situation is not as clear. But the IOM report says roughly 530,000 medication errors occur among Medicare recipients in outpatient clinics -- and that this is most likely an underestimate.  "The numbers really are staggering," says Wu, who helped write the IOM report. "Medication errors happen every day."

1. Get in your doctor's face

The first step to preventing medication errors is to know exactly what your doctor is prescribing, how often you should take it, and at what dosage. Don't walk out of the doctor's office confused. "If you don't understand something, you should ask," says Wu. "This may seem like you're getting your doctor annoyed with you, but we doctors should get used to it."  Also, when your doctor writes a prescription, make sure you can read it.

2. Get in your pharmacist's face

At the pharmacy, don't just take the prescription and walk away. Check the name, make sure it's what you were prescribed, and show the medicine to the pharmacist to double check you have the right one.

3. In the hospital, get your meds in writing

Ask for a list of all the medications you're supposed to be given, what they look like, and when you should get them.

4. Make sure this is really YOUR medicine

Especially if your name is "Smith" or "Jones."

Of course, it can be tough to notice mistakes when you're sick. That's why researchers who specialize in medical errors say it's very important to have someone with you in the hospital.

5. Get dramatic if you have to

* * *

I have been prescribed medications I was told by other doctors not totake, and told "it'll be fine".  The doctor relied on the fact that it was late in the day and I was tired, not likely to wage a long battle with him.  I objected as strenuously as I had energy for, and he kept repeating "it'll be fine"; it was obvious that nothing was going to get him to change his mind.  (Though maybe I should've "gotten dramatic", called upon my trained soprano skills and started screaming at a volume that would get other medical staff to come running.)

Two days later, another doctor asked "are they trying to kill you?" and told me that if I wanted to try that medication, I should only do it in a hospital or nursing home where they could react immediately to any medical emergency that might result; my offer to have a nurse-friend stay the weekend with me was not good enough: she would not have the necessary equipment at hand when something went terribly wrong (as was highly likely).  I'd had dramatic side effects from a related medication, and NEVER should have been given any other medication in that family.  I knew that, the pharmacist knew that, but the prescribing doctor either didn't know or didn't care (or, as the second doctor mused, was trying to kill me because my claim against the medical group for malpractice would die along with me).

Thank God I'd been educated the first time around not to ever again take anything in that family, and didn't blindly trust the doctor's assertion "it'll be fine".

In that case, getting in the doctor's face was not enough.  I had to be pro-active and not fill the prescription, and talk to another doctor about it. 

Theoretically, alerting the pharmacist to my prior reaction would have gotten him on the phone to the doctor for a different prescription, with more effect than my own request for something else.  But, obviously, after hearing from the second doctor that they were trying to kill me, I chose not to trust anything else they might prescribe and walked away from that medical group.

Working with a doctor to regain your health should not be an adversarial procedure, but for too many CFS patients it becomes exactly that: poorly-informed doctors want to treat you for depression, not for viral and neurological problems, and wind up making you sicker, perhaps permanently.

You need to take charge of your own medical care, and not trust the doctors to get it right.  They're human, they make mistakes.  Don't be afraid to question them.  The life you save may be your own.

 

Tags: malpractice, medication, error, pharmacist, doctor, harm, drugs

Valacyclovir treatment in EBV/CFS

Dr. Lerner discovered viral heart damage in CFS patients and recommends Holter monitor test results be part of the diagnostic process.

 

http://www.immunesupport.com/library/showarticle.cfm?id=8523&T=CFIDS_FM&B1=EM112807C

  Valacyclovir treatment in Epstein-Barr virus-subset Chronic Fatigue
  Syndrome: Thirty-six months follow-up - Source: In Vivo, Sep-Oct 2007

  by AM Lerner, et al.
  ImmuneSupport.com

  11-23-2007


  Background: We hypothesized that subset classification of Epstein-
  Barr virus (EBV) in chronic fatigue syndrome (CFS) is required.

  At first, a blinded-random placebo-controlled trial of valacyclovir
  in EBV CFS subset was performed (Group 1), and this EBV subset was
  followed for thirty-six months (Group 2).

  Patients were given valacyclovir at 14.3 mg/kg every 6 hours. The
  validated Energy Index (EI) point score assessing physical functional
  capacity, Holter monitor, multigated (radionuclide) MUGA rest/stress
  ventriculographic examination, EBV serum IgM viral capsid antibodies
  (VCA), and EBV early antigen diffuse (EA) were followed.

  n After six-months, Group 1 CFS patients receiving valacyclovir
  experienced an increased mean least square EI point score +1.12 units
  (122 kcal/day), while the placebo cohort increased +0.42 EI units (65
  kcal/day).

  n EI point scores at Group 2 increased progressively. Sinus
  tachycardias decreased and abnormal cardiac wall motion improved.
  Serum antibody titers to EBV VCA IgM decreased. Patients resumed
  normal activities.

  Source: In Vivo. 2007 Sep-Oct;21(5):707-13. PMID: 18019402, by Lerner
  AM, Beqaj SH, Deeter RG, Fitzgerald JT. Department of Medicine,
  William Beaumont Hospital, Royal Oak, MI, USA. [E-mail:
  amartinlerner@yahoo.com]

Tags: valacyclovir, CFS, EBV, heart, cardiac, virus, energy

RN Reveals Patient Neglect

The East Anglia ME Patient's Partnership (EAME) and the 25% Severe ME
Group.

PRESS RELEASE Nov 28 2007 (may be reposted)

New survey highlights the neglect of severe ME sufferers  in Norfolk
and Suffolk

(The survey can be downloaded from www.metrainingco.org.uk)

Very sick patients in this region are receiving no medical service
whatsoever , rather they are  being left for up to decades on end "just
to get on with it", according to a new survey released today by the
East Anglia ME Patient's Partnership (EAME) in conjunction with the 25%
Severe ME Group; the only national charity representing those who have
severe ME.

Myalgic Encephalomyelitis (ME) , five times more prevalent than AIDS in
the UK, is a serious biomedical disorder. Only those in the final
stages of terminal cancer or dying of AIDS can possibly know what it is like to experience the level of sickness that a severe ME patient has to endure for years , often decades on end . Yet the severely affected
in Norfolk and Suffolk encounter disbelief, an almost total lack of
proper biomedical treatment and even abuse from medical professionals .

One severely ill patient, for example, describes in the survey
(attached) how they were forced to undergo :

" hospitalisation and enforced mobilization . I had to walk to the
canteen to get food and drink which I only managed once a day."

Another patient described how they saw a professional who " had no
compassion or understanding of ME . I felt like throwing myself under a
bus when I was told I had no life, and that I should get out into the
world and do more."

Norfolk and Suffolk ME patients are asking for acceptance that they
have a real illness . As this patient states : My symptoms are
downplayed and invalidated. My safety is at risk because I have no one
to turn to give proper advice or medical help, even with severe
symptoms. Without a biomedical service my life continues to be
physically diminished. I am desperately physically ill, neglected and
concerned for the future."

EAME is currently lobbying hard for proper biomedical  treatment and
support for people with ME in East Anglia.

EAME executive member Greg Crowhurst comments :

"The people that this Report is about should not have to carry on
suffering such serious symptoms without relief and without an
appropriate service . People with ME need to be separated, absolutely ,
from people with a Chronic Fatigue ; that is the great challenge of our
time. There  is an outstanding opportunity here for Norfolk and Suffolk
to lead the way."


Contact : Greg Crowhurst :  gcrowhurst@gmail.com


Notes for Editors :

Greg Crowhurst , a registered nurse cares full time for his wife who
has suffered from severe ME for 14 years. He is secretary of the 25%
Severe ME Group and an executive member of EAME..

A video of his wife's life with severe ME : This is Not Fatigue, can be
viewed on YouTube : http://uk.youtube.com/watch?v=NZP1z9EdVi8  

There are an estimated 62 500 Severe ME sufferers in the UK

EAME :

Promoting collaboration and communication about all aspects of Myalgic
Encephalomyelitis (Chronic Fatigue Syndrome) within East Anglia.

The East Anglia ME Patient Partnership's goals are to work closely with
regional health, education and social support services, and both local
and national government policy makers to;

* Fight for the interests of people in East Anglia with ME, their carers
and families.
* To inform and assist in the development of health, educational and
support services for adults and children with ME.
* To promote research into the organic causes of ME and potential cures.

The East Anglia ME Patient Partnership group is an umbrella group with
members representing local ME Support Groups from around the region.

It was formed to facilitate wide patient participation with health care
providers and in particular, the Norfolk and Suffolk CFS/ME Service at
the Lowestoft Hospital.

Within the region, ME/CFS clinics are organised into services serving
Peterborough & Cambridgeshire and the "Norfolk and Suffolk ME/CFS
Service".

This latter clinic is the second largest of twelve Clinical Network
Co-ordinating Centres in England for ME and has been established for
many
years.

http://eastanglia.me.uk/

* * *

This is a complaint around the world -- a lack of educated, compassionate doctors who know Thing One about CFS.  There used to be two CFS specialists in my area; for more than ten years, I tried to get an appointment with one or the other, and was always told "Doctor isn't taking new patients".  They've since both retired, so there is no one in the area who is considered a competent CFS specialist by patients.  (There's one who calls himself a CFS specialist, but treats every patient for candida; those who have candida on top of CFS improve and those of us who don't, have simply wasted our money.)

Instead, we deal with doctors who try to jolly us, that our symptoms can't possibly be as bad as we say, or maybe they don't exist at all, and refuse to consider any informational literature provided by patients.  If the patient tries to educate them that anti-depressants are proven completely useless against CFS, the patient is accused of not wanting to take the anti-depressants because she "doesn't want to get better and have to go back to work".  There's no compassion to be had, only verbal abuse; patients who've been hospitalized have described physical abuse as well. 

There are reports that patients too sick to walk were told to get up and get their own drink of water because hospital staff refused to believe the paralytic muscle weakness was anything other than laziness, or a manipulative attempt to be waited on.  I can tell you, as a patient who lives alone with no one to manipulate that way ... when I crumple to the floor, it's for real.  No one is here to feel sorry for me.  No one's going to bring me breakfast in bed.  I could lay on the floor for a few days before anyone would discover me. 

All those "secondary gains" that doctors assume we're getting are not there for me or the many other patients whose spouses got fed up and walked out.  Which doesn't stop the doctors from assuming that there's someone other than a spouse available to take care of us.

 

 

Tags: CFS, CFS/ME, ME/CFS, neglect, hospital, doctor, abuse

Neuropsychology of Fatigue

Clinical neurophysiology of fatigue.

Journal: Clin Neurophysiol. 2007 Nov 24; [Epub ahead of print]

Authors: Zwarts MJ, Bleijenberg G, van Engelen BG.

Affiliations: University Medical Centre Nijmegen, Institute of
Neurology, 920 Department of Clinical Neurophysiology, PO Box 9101,
6500 HB Nijmegen, The Netherlands; Neuromuscular Centre Nijmegen,
Department of Neurology, Radboud University Nijmegen Medical Centre,
Nijmegen, The Netherlands.

NLM Citation: PMID: 18039594


Fatigue is a multidimensional concept covering both physiological and
psychological aspects. Chronic fatigue is a typical symptom of
diseases such as cancer, multiple sclerosis (MS), Parkinson's disease
(PD) and cerebrovascular disorders but is also presented by people in
whom no defined somatic disease has been established. If certain
criteria are met, chronic fatigue syndrome can be diagnosed.

The 4-item Abbreviated Fatigue Questionnaire allows the extent of the
experienced fatigue to be assessed with a high degree of reliability
and validity. Physiological fatigue has been well defined and
originates in both the peripheral and central nervous system. The
condition can be assessed by combining force and surface-EMG
measurements (including frequency analyses and muscle-fibre
conduction estimations), twitch interpolation, magnetic stimulation
of the motor cortex and analysis of changes in the readiness potential.

Fatigue is a well-known phenomenon in both central and peripheral
neurological disorders. Examples of the former conditions are
multiple sclerosis, Parkinson's disease and stroke. Although it seems
to be a universal symptom of many brain disorders, the unique
characteristics of the concomitant fatigue also point to a specific
relationship with several of these syndromes.

As regards neuromuscular disorders, fatigue has been reported in
patients with post-polio syndrome, myasthenia gravis, Guillain-Barré
syndrome, facioscapulohumeral dystrophy, myotonic dystrophy and
hereditary motor and sensory neuropathy type-I. More than 60% of all
neuromuscular patients suffer from severe fatigue, a prevalence
resembling that of patients with MS.

Except for several rare myopathies with specific metabolic
derangements leading to exercise-induced muscle fatigue, most studies
have not identified a prominent peripheral cause for the fatigue in
this population. In contrast, the central activation of the diseased
neuromuscular system is generally found to be suboptimal. The
reliability of the psychological and clinical neurophysiological
assessment techniques available today allows a multidisciplinary
approach to fatigue in neurological patients, which may contribute to
the elucidation of the pathophysiological mechanisms of chronic
fatigue, with the ultimate goal to develop tailored treatments for
fatigue in neurological patients.

The present report discusses the different manifestations of fatigue
and the available tools to assess peripheral and central fatigue.

* * *

As I've said in the past, and will certainly say again in the future, if I were to tell people that I had fatigue related to some accepted neurological disease like MS or polio, it would be considered perfectly normal and no one would DARE call me lazy.  But because I have CFS, the concept of "all blood tests are normal" precludes the doctors and judges realizing that neurology does not show up on blood tests.  The name alone is enough to brand me as "too lazy to work" without investigating why I have symptoms which cannot be faked.

Dr. Starlanyl suggests that if "all tests are normal" that means nothing more than that the right tests haven't been done.  Of course, her perspective is as a doctor who is also a patient, someone who knows she's not faking or imagining things, and not as a HMO doctor who sees his bonus reduced with every test he orders, for whom it is more lucrative to blame the patient than to order expensive neurological tests, MRIs, sleep studies, etc. looking for things that don't show up on basic first round blood tests.

I wanted a sleep study to prove that the doctors were wrong in asserting "sometimes we think we are awake when we are really asleep" -- if they had hard proof that I was only getting 2 hours sleep, something other than my claim that I laid awake till after 5 AM most nights, they might have addressed the severe sleep disturbance.  Instead, they tried to jolly me into believing that I was mistaken, and that the only reason to order a sleep study was for sleep apnea. 

Maybe they didn't want to lose their bonuses for keeping test expenses to a minimum, or maybe they didn't want to see the objective proof that there was something very wrong with my sleep pattern; either way, they continued to claim there's "no objective evidence" while refusing to investigate in ways that would create the necessary objective evidence to convince them that there were objective symptoms and not just the over-active imagination of a hypochondriac who'd found a way to avoid working.

And, for the record, I haven't found a way to avoid working -- I have been working in temp jobs and self-employment since losing my job for being too sick to work full-time.  If I were really just "too lazy to work" I wouldn't be doing that ... I'd be hanging out in upscale bars looking to seduce a Sugar Daddy.

Tags: fatigue, neurology, MS, polio, CFS, CFS/ME, ME/CFS, HMO, tests, neurological, Parkinson's, Guillan-Barre

Federal Response to CFS

From Cort Johnson phoenixcfs@yahoo.com:

This is part one of a three part interview with Dr. Ken Friedman. Dr.
Friedman was on the CFSAC committee from 2003-2006, he co-authored
the New Jersey Consensus Manual For the Diagnosis and Management of
CFS, he's a certified trainer of the CDC's CFS physician education
program, and he played a vital role in the Vermont CFIDS
Association's recent legislative efforts. Over the past few years, he
has produced several papers aimed at assisting CFS patients
understand the issues they face at the federal and state levels. He
is one  of our most active and knowledgeable advocates.

In this interview Dr. Friedman gives a blunt appraisal of  the
federal response to CFS and its interactions with the federal
advisory committee for CFS, the  CFSAC. You can find it at

   http://phoenix-cfs.org/IntFriedmanPtINov07.htm

   Part II will deal with CFS research, the Roadmap Initiative
   Part III will focus on CFS advocacy and the future of CFS.

Cort Johnson

"If NIH had not solved CFS in the past 15 or 20 years, why would giving them money to do the same thing for another 15 or 20 years lead to a better result?"

"I do not think that the lack of response from the U.S. Secretary of Health disillusioned any member of the committee. I think anger, resentment, and confusion would be more accurate descriptions of our feelings."

"laboratory chiefs are after Nobel Prizes in medicine. Those interests will not easily be subverted into altruistic CFS research based on the need for more compassionate care!"

"Yes, both NIH and the CDC were paying more attention to CFS, but is that amount of attention sufficient for the magnitude of the problem? Is that amount of attention sufficient to find the cause of CFS, or find a treatment? Obviously not!"

"The efforts of the DHHS to educate physicians and other healthcare professionals about CFS are, in my judgment, inadequate. ... Not one patient had seen the Toolkit in any healthcare provider’s office that they use. Fortunately, Bernie Sanders had sent a representative to the program. We had met priorto my presentation. I looked him straight in the eye, and said, “We have work to do, don’t we?” ... The CDC/CAA “awareness campaign” is a multi-million dollar campaign. If it is not reaching all areas of country, and if it is not reaching all segments of the healthcare provider community, should we not be doing something more?"

"Unfortunately, the message of the Spark Awareness Campaign is to, “Get diagnosed, get treated,” and ends there! The false assumption made in that campaign is that there are healthcare providers capable of diagnosing CFS and capable of treating it."

 

* * *

And this is the problem ... there are still doctors out there who think that patients say "I have CFS" to avoid the stigma of mental illness of calling it depression.  These uneducated doctors treat the patient for depression, and get frustrated when the patient reports the treatment is not helping.  In fact, it's been proven time and again that anti-depressants are useless for CFS if the patient does not also have depression (in which case, it relieves the depression symptoms and leaves only the CFS portion to deal with -- for some patients, that's enough to get them back to work).

 

As long as doctors are confused about the origin of CFS (the "real" kind starts with a virus), they're not going to be able to diagnose it or treat it.

 

Medical schools and continuing education programs need to go back to teaching what we knew about ME before it was re-named CFS.  When I first read Dr. Ryll's handout, I was surprised by his polio connection; no doctor had ever mentioned that to me before.  Then I did more research and found that the doctors of his generation knew that; the doctors of the current generation think ME/CFS has nothing to do with viruses because that's what they were taught.  They have no idea that there are symptoms other than fatigue, or that there are neurological tests to prove the patient isn't faking, because that wasn't taught; it makes sense to them (and to a lot of other people) that the only symptom of Chronic Fatigue Syndrome would be fatigue.  Throw at them the patient-preferred name Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and they have no clue what immune dysfunction you could possibly be talking about ... the low level of NK cells in CFS has been known to researchers and patients for a long time, but has never gotten out to the physician community at large. 

Tags: CFS, CFS/ME, ME/CFS, virus, Federal government, CFIDS, NK cells, immune dysfunction

Lyrica for Fibromyalgia

I'm sure you've all seen the TV ads for Lyrica, touting it as the "first medication approved for fibromyalgia".  Here's the research backing that up.  I hope as my readers try Lyrica, that they'll share a comment with us about their experiences, good or bad.

 

The Effect of Anxiety and Depression on Improvements in Pain in a
Randomized, Controlled Trial of Pregabalin for Treatment of Fibromyalgia.

Pain Med. 2007 Nov;8(8):633-638.

Arnold LM, Crofford LJ, Martin SA, Young JP, Sharma U.

Women's Health Research Program, Department of Psychiatry, University
of Cincinnati College of Medicine, Cincinnati, Ohio, USA.

PMID: 18028041


Objective. To assess symptoms of anxiety and depression in a large
cohort of fibromyalgia patients and to determine the impact of these
symptoms on response of pain to pregabalin treatment.

Design. Patients completed the Hospital Anxiety and Depression Scale
at the baseline visit in a randomized, controlled trial of pregabalin
for treatment of fibromyalgia. Mean anxiety and depression subscale
scores were calculated, and proportions of patients by symptom
severity were determined. The difference between the proportion of
patients reporting anxiety and depression at baseline was tested
using McNemar's test. Baseline anxiety and depression were evaluated
as covariates by including them-as interaction terms with
treatment-in an ancova model. A path analysis evaluated the
association between improvements in anxiety and depression and pain relief.

Results. In total, 529 patients were enrolled. Significantly more
patients reported anxiety symptoms (71%) than depressive symptoms
(56%) (P < 0.0001). Improvement in pain symptoms with pregabalin
compared with placebo did not depend linearly on baseline anxiety or
depression scores. By path analysis, 75% of the pain reduction was
not explained by improvements in anxiety and depressive symptoms.

Conclusions. Anxiety symptoms were more common than depressive
symptoms in this cohort. Our results suggest patients with
fibromyalgia should be routinely assessed for the presence of both
anxiety and depression. The pain treatment effect of pregabalin did not depend on baseline anxiety or depressive symptoms, suggesting pregabalin improves pain in patients with or without these symptoms.  Much of the pain reduction appears to be independent of improvements in anxiety or mood symptoms.

Tags: fibromyalgia, pain, lyrica, pregabalin, anxiety, depression, mood, fibro, medication, prescription

More from Dr. Greensmith

PERMISSION TO FORWARD, REPOST & USE IN NEWSLETTERS.

We urge you to ensure that as many of your M.E. contacts, worldwide, know
about this very important ME series on the "You and Yours" programme on BBC
Radio 4, starting Friday 2 November and then From Monday 5 - 12 November
2007.

In the first of a special series on ME, David Puttnam producer of Chariots
of Fire, Bugsy Malone and The Killing Fields tells how ME has affected his
life and career.

If you cannot listen, live, at 12.04pm, just after the midday news, daily,
it may be possible to "listen again" after 3pm here
http://www.bbc.co.uk/radio4/youandyours/listenagain/friday.shtml  (or go to
the www.bbc.co.uk website and search for "You and Yours" if the link does
not work).

You may also wish to contribute to their discussion board here
http://www.bbc.co.uk/dna/mbradio4/F2766774?thread=4724385&skip=0&show=20

I have submitted this fundamental question about M.E. (below), which I hope
they will ask contributors during the week but, whether they do or not,
everyone is very welcome to come to our forum and discuss it here
http://mefreeforall.org/Forum.327.0.html?&no_cache=1&view=single_conf&cat_uid=8&conf_uid=8
(or, if the link does not work, go to www.mefreeforall.org, click on "forum"
in the menu, left, log in, go to "ME Community Room" and join in the debate.


You and Yours ME Series: Fundamental question for contributors.

Before you broadcast even the first programme in this series, M.E .
sufferers will be grateful that   You and Yours   is giving this
unprecedented focus to their serious neurological illness, so often hidden
away because of its debilitating symptoms, which keep many sufferers
invisible and for giving the series its correct name,  M.E., not the fudge
CFS/ME which, so many of us believe, is seriously impeding research progress
in finding the physical cause of this illness which, in turn, should suggest
appropriate treatment towards cure.

The term  Myalgic Encephalomyelitis (from myalgic, meaning muscle pain, encephalo-, relating to the brain and spinal cord and  itis-, meaning inflammation) should be restored. There is ample research evidence to support all its elements, including the most controversial  part, inflammation, which has caused some to prefer Myalgic Encepahlopathy but, even with this version of  M.E., there is no place for "fatigue".

The overwhelming feeling of lethargy, which M.E.sufferers experience, is not the same as tiredness we all usually understand. It does not come on with the expenditure of physical or mental exercise but is omnipresent for no such effort. Nor is it refreshed by any number of hours of sleep as normal fatigue is. In addition, there is an extraordinarily long period of recovery time following even a minuscule amount of effort ("post exertional malaise") and there is a whole range of symptoms, including muscle pain in all limbs, poor memory and concentration, poor mobility, dizziness etc. that the word 'fatigue' alone does not encompass. The main problem with 'chronic fatigue' is that it is too broad, too all-inclusive, to be of any discriminatory value and, as a result, tends to dilute any research findings. For example, people routinely have chronic fatigue after any illness, or surgery. I can't think of an illness that does not have fatigue following it.This is not to belittle chronic fatigue; it is very debilitating thing to have but it is to make the distinction between it and M.E.

Will you ask any contributor who uses the term CFS/ME: Does the '/'  between
them mean "and" or "or"?  Are you talking about one illness, 'CFS' and
another illness, ' M.E.' ?  Do you think that M.E. is one of a number of
illnesses under the umbrella CFS? Do you think CFS and M.E. are synonymous
and interchangeable? Along with other organisations, worldwide, ME Free For
All. org advocates dropping CFS altogether as unhelpful to all. For example,
since chronic fatigue, follows every illness, you might as well say
Illness/ME. It is of no more discriminatory value than that. If you assert
that M.E. and CFS are synonymous and interchangeable, why use two terms? Why
not drop one altogether? You wouldn't say Rubella/German Measles because
both are the same. You wouldn't say Measles/German Measles because they are
discretely different. You wouldn't say Chronic Fatigue Syndrome/German
Measles (or any other illness) because it would be too generalised to be of
any value.

The tangled mess due to lack of agreement about terminology is not merely a
semantic one, which impedes research progress into the physical cause of M.E.,
it also has very serious deleterious consequences for recommending
treatments that are not appropriate for people with M.E. and may even be
harmful to some. Since M.E. is, crudely, indiscriminately, bundled in with
all other illnesses having chronic fatigue as a principal symptom (and what
would that not include?) sufferers are offered only two management
techniques, Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment
(GET), the first of which has no lasting benefit for people with M.E. and
the second of which (as research by the 25% Group, which represents severely
affected people with ME, shows) makes up to 82% of sufferers worse after it,
some irrecoverably so, in wheelchairs or bed-bound.

I look forward to seeing whether You and Yours presenters can manage to get
an unequivocal answer from some contributors in this week that many of us
have not been able to secure in decades of trying.

With thanks for this important initiative, on behalf of the whole M.E.
community.

Yours sincerely
Dr John Greensmith
(Research Psychologist, diagnosed M.E. 19 years, now suffering bad relapse,
some days requiring bed-rest, some up but not dressed.)

drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

<a href="http://technorati.com/tag/CFS" rel="tag"><img style="border:0;vertical-align:middle;margin-left:.4em" src="http://static.technorati.com/static/img/pub/icon-utag-16x13.png?tag=CFS" alt=" " />CFS</a>

Tags: CFS, CFS/ME, ME/CFS, myalgic encephalomyelitis, myelitis, fatigue

Psychological Alternatives to CBT

One of the commonest arguments  against psychologists like myself,
i.e. people who believe that CBT/GET should be an adjunct, rather
than basis of the management of CFS/ME, is that 'we're out-of-date'.
We've been informed that CBT is often used to help in the management
of cancer, MS and rheumatoid arthritis, though the
writers  invariably fail to mention that such interventions tend to
be limited to individuals with emotional complications and those who
do not respond to counselling e.g. by MacMillan nurses. Nor do they
generally mention that the effectiveness of CBT is often modest and
limited to emotional variables. These impressions are shared by the
various support groups dealing with those patients, including the
Terrence Higgins Trust, Cancer Bacup etc. Leaving aside the issue of
cost, the main reasons why I continue to take the position I have is
because of the following:

1. CBT assumes that psychological factors play a major role in the
aetiology of symptoms and the nature of those factors have been
discussed in detail in many articles and books. There is a covert
assumption of a universal response to CFS/ME, i.e. fear. According to
the CBT model of CFS/ME, this fear leads to avoidance, deconditioning
and stress, which in turn trigger physiological  changes, undermining
recovery and complicating the condition. The less covert assumptions
are that there exists a strong association between deconditioning and
fatigue (yet to be proved), and that there is no clear evidence of
pathology which underlies the chronic phase of the illness, hence the
rationale for CBT, even if it's based on assumptions.  (NB: Despite
the PR about the need to take a holistic approach and avoid Cartesian
dualism,  the proponents of the CBT model have shown a surprising
fondness for the old biomedical paradigm, i.e.  if there isn't a
single 'physical' cause or pathway, one can't classify an illness as
a disease. The fact that we're dealing with a mixed population and
that there's unlikely to be a single cause, is of little interest.
Why? Cartesian dualism doesn't do heterogeneous populations and
subsets. Hence the presence of pathology in subgroups is usually
dismissed under  the heading of 'inconsistent results', and attention
is thereby directed away from these inconvenient findings and back to
the notion of  CFS as a universal, maladaptive psychological response
to a virus etc.)

The CBT model, recently reincarnated but essentially the same,
provides the basis for the type of CBT programmes being discussed in
the medical literature today. It is compatible with biopsychosocial
approach to illness, but there again, one sees signs of
post-modernist,  dualistic thinking. Thus in articles on  CFS/ME, the
'bio' is limited to a viral trigger and the consequences of stress on
the HPA asis, and virtually everything is psycho-social.  Well,
mostly psycho. As in psychiatric. There's little on  positive
personality traits like hardiness and optimism, the  use of
problem-focused coping, let alone pro-active coping strategies like
pacing (pro-active: to prevent problems). Again, there is the
assumption that everyone responds in the same  way. The same, unhelpful way.

CBT is not appropriate for sensible people who use adaptive coping strategies but who could do with some more information and social support. Given the literature, I  find it hard to accept comments
that the use of CBT for CFS does not assume that the latter is
psychiatric. If it is not, we need to clarify why if minimal exertion
exacerbates symptoms, the main aim of  treatment is to increase
activity. As I've noted before, that is as logical as asking a smoker
with lung cancer to gradually increase the amount they smoke. The CBT
model can't provide an answer based on evidence (the existence of
deconditioning remains an assumption).  Why is this important?

The assumptions behind the CBT model limit the type and nature of the
therapeutic options offered to patients. CBT is a relatively rigid
and inflexible approach, which cannot adequately deal with the
complexity of CFS/ME (not just the evidence of pathology but also the
fact that different people respond to illness in different ways,
depending on knowledge, personality, social support, resources
available to them, time, age etc). Though the NICE guidelines
encourage a patient-centered approach, the actual advice limits
therapists to CBT, GET and the untested intervention I've termed
GET-lite. Colleagues who describe CBT in terms of  flexible,
multi-component programmes including education and dietary
advice  are effectively  blurring the boundaries. CBT was not
intended as a psycho-educational intervention for newly diagnosed
patients. If you don't believe me, read the information on
authoritative sites like those of the Royal College of Psychiatrists
and MIND. Psychologists use other  interventions to education
medically-ill patients and help them cope. We refer to them variously
as self-management programmes, multi-component or multi-dimensional
programmes, coping effectiveness training (CET), and so on.


2. The above interventions are, based on evidence,  as effective and
possibly cheaper than CBT. The important point to make first of all
is that they do not assume that people are adopting inappropriate
coping strategies because of  factors such as fear, phobic avoidance
etc. Many are based on another model: the Transactional model of
stress and coping, devised by Richard Lazarus and colleagues (see
below). This is also consistent with a biopsychosocial approach, but
acknowledges the complexity of disease, and most significantly, the
fact that we're all individuals. The alternatives are more practical
too, they allow the therapist to mix and match.   If psychologists
identify evidence of psychological distress and maladaptive coping,
then the normal protocol is to offer those affected appropriate
therapies, including CBT.  It is recommended that these interventions
form part of a comprehensive programme offered by an
multi-disciplinary team.  I believe that this is the most appropriate
approach when it comes to CFS/ME.

What is the evidence that alternatives to CBT work? I calculated
Cohen's delta (d), which basically measures the effectiveness of a
treatment ('effect size') and allows one to compare different
studies. A d of .8 is impressive. Using fatigue as the outcome
measure, I found little difference between the various trials. d
rarely exceeded .6, an indication of a modest effect. So why did NICE
dismiss the alternatives? Why did they leave health professionals
with such a limited number of therapeutic options?

There were at least four published studies on pacing and the type of
programmes I've described. One was probably not of sufficient
quality, so NICE had a good reason to ignore it. There were three
others, two were RCTs and one a perfectly valid, controlled trial.
One of the RCTs wasn't included, though a paper by the same author in
the same issue of the journal was referred to elsewhere. The
researcher found significant improvements on two outcome measures and
this was maintained at follow-up. Cohen's d was .6 if I recall. An
objective reviewer might have been impressed enough to add it to the
list of therapies but to my knowledge,  the study wasn't evaluated,
thus reducing the apparent evidence.  The other RCT (on pacing) was
classified under GET, though it was classic pacing (patients could
stop when they felt unwell, whereas GET encourages patients to stick
to pre-determined schedules and tolerate any mild to moderate
symptoms).  The remaining study was dealt with as follows.
Significant group differences on five outcome measures exceeded the
criteria for 'positive treatment effect' *, so NICE changed two
significant differences to non-significant differences, (they had no
access to raw data so this was not due to  a review of the
statistical analysis). A p value of .013 (significant) was changed to
.13 (not of interest) and although  that was corrected when it was
pointed out to them at the discussion stage, the conclusion that this
provided additional evidence was not changed. Consequently, the
programme remained categorised as having no effect.  The six-month
follow-up was ignored (loss of two validity points),  and so on. An
objective evaluation might have concluded that this programme
produced modest results, similar to those found in trials on CBT,
with a d of .6, (though for self-efficacy, it was .8). The main
drawback of the trial was the small number of participants (just over
40), but this was balanced by the fact that it included additional
outcome measures, e.g.  to assess symptoms other than fatigue. One
quarter of those in the trial had recovered to such an extent after
six months that they were discharged. That's quite impressive,
though  NICE did not see it that way.  The BPS  reminded them of the
alternatives, including that study,  but perhaps it was yet another
'inconvenient truth'? Suffice to say, the modus operandi adopted by
NICE  dealt rather elegantly with their 'three-studies-or-we're not
bothered' argument.  It  allowed them to claim that there is no
evidence for techniques such as  pacing etc but whether making
studies disappear and basing views on 'typos' and incomplete
information  is good science, is another matter.

I've discussed the details about Cohen's d and NICE's attitude to
alternatives before on Co-Cure.  Hence this is simply a review.


3. I may well be out-of-date but my approach to illnesses like CFS/ME
is  consistent with those of other psychologists, and I highly
recommend the book edited by Paul Kennedy: 'Psychological Management
of Physical Disabilities', published in 2007 by Routledge. It reveals
that most  contributors advocate CBT for some of their patients, but
it is clear they also use alternatives, and often as a first-line
treatment.  The main aim when it comes to  patients with spinal cord
injuries, heart disease and other conditions is primarily to meet
individual needs and preferences. Options available include
information, counselling, coping skills training, motivational
interviewing, written emotional expression and even aquatic therapy.
The book also reminds us of  Lazarus's model of stress and coping,
which is as applicable to CFS/ME as it is to cancer, MS, RA etc.
Out-of-date? Absolutely not.

I wrote many years ago about SMI's (again, on Co-Cure). No support
groups took it up and therefore it was relatively easy for the people
at NICE to promote CBT. They had a clear run. After all,  the CRD
review of treatments had made the alternatives disappear,  and
support groups did not have the knowledge to promote
them.  Incidentally, this is not a problem in the USA, where the team
run by  Prof. Jason has worked hard to test alternative strategies
and offer them to patients.

Kennedy's book describes a perfectly reasonable model which can be
tested and used as a basis for management of CFS/ME. It places CBT in
context, and provides strong arguments for a more scientific,
evidence-based debate. I covered the same territory in my PhD more
than ten years ago. I hope it won'tbe anotherten years before the
CFS community looks at this material and recognises the benefits.


* Footnote

If I recall, the criterion for a treatment effect was a significant
group difference on at least two outcome measures.

----------------------------------------------------------------------
Ellen M. Goudsmit PhD CPsychol CSci AFBPsS

* * *

As Dr. Goudsmit notes, psychological approaches are appropriate to dealing with the side effects of CFS (such as depression BECAUSE you can't do the things you like), but are not helpful for the post-viral symptoms, which are not psychological in origin.  People with any chronic illness may develop depression because of their health problems, but CFS is no more "caused by depression" than cancer is.

Only about half of CFS patients meet the diagnostic criteria for depression.  That means the other half of us are not depressed, and treating us for depression won't do a damn thing.  What I need -- what a lot of us Type A CFS-ers need -- is instead for someone to give us permission to do less, instead of urging us to give up our "fear of activity" and trying to do more.  Trying to do more is what landed me in bed in the first place.  But, instead, I was ordered to push myself -- appropriate advice for someone with depression, but which could be fatal for someone with CFS.

Pacing works.  It's the only thing that works.  Don't let someone guilt you into pushing yourself.  We have PWCs who are permanently bedridden because they gave in to the pushing to do more.  But, what we call "pacing", other people call laziness, and when you're seriously ill, it's hard to stand up to them and tell them that they're wrong: it's not laziness, it's self-preservation.  It's doing what you need to do to get better.  And no matter how much positive thinking you do, it's letting your body rest and get itself well that is the best treatment for CFS, not running around distracting yourself from your symptoms as someone suggested I do.

As Dr. Goudsmit says, there's little attention given to traits like hardiness and optimism.  CFS patients tend to be very hardy creatures; they push themselves to the point of collapse.  At which point, they are derided by people who don't understand that it's not a matter of picking yourself back up and going back to work the nextday -- that's a physical impossibility. 

And optimism?  That worked for me for until I realized that Modern Medical Science wasn't making any advances on a cure for CFS.  It's hard to stay optimistic when you hear that the only research being done into the cause of your virus is research trying to pin your illness on psychology.  We have 70-year-old literature relating ME to polio; information that lies dormant because the powers that be would rather ignore all the patients saying "I had a fever, a virus" and focus on telling us to ignore the physical signs, what we really have is a case of depressive laziness that can be cured by ignoring the objective symptoms and forcing ourselves to push beyond the point of collapse.

With any other illness, if you reported feeling feverish they'd tell you "get plenty of rest and drink plenty of fluids".  But the psychobabble about CFS tells you to ignore the fever, you'll feel better if you exercise.  Go run a marathon or something.  Well, the experts know that the fastest, cheapest way to diagnose CFS is to ask the patient what happens when they exercise: a depressive will return energized, and a CFS patient will collapse into bed.  Unfortunately, what the experts know doesn't always filter down to the PCPs, who still think that CFS can be treated with anti-depressants and exercise because it's just another name for depression.

Dr. Goudsmit, incidentally, is a CFS expert both academically and personally, since she studies CFS first-hand in her own life every day.  I am more inclined to take her advice than that of a PCP who doesn't even know that CFS and depression will produce diametrically opposite test results on certain tests.

 

CFS FACTS WEBSITE

The CFS Facts website is still down due to a dispute between my web designer and her hosting service.  He's apparently holding all her URLs hostage, even those belonging to other people (like me).

Meanwhile, we have much of the same information (or links to it) at   http://groups.yahoo.com/group/CFS_Facts/

Despite the implication of the name, we do deal in both CFS and fibromyalgia.

 

Tags: CFS, facts, website, fibromyalgia

Sorry, you have an illness not endorsed by a celebrity

Sorry, you have an illness not endorsed by a celebrity

When Oprah revealed last month that she has been struggling with a thyroid
disorder, New York Times health columnist Tara Parker-Pope wrote, "The
ultimate celebrity endorsement from Oprah Winfrey may finally give thyroid
problems the respect they deserve." Yes, and thousands of patients being
treated for an underactive thyroid gland could finally breathe a sigh of
relief. Hypothyroidism had been elevated to legitimate disease status. It
wasn't all in their heads.

Physicians like me rejoiced as well, knowing that one of the hardest things
we have to do is tell a patient that he or she has an NCEI, that is, a
non-celebrity-endorsed illness. Not only have they come down with, say,
membranous nephritis or celiac disease - now they have to deal with the very
lonely fact that nobody of any significant public stature has contracted
said illness. They're going to have to go it alone.

Now, don't get me wrong. There certainly is an altruistic aspect to
celebrities going public with their medical problems. They don't want others
to go through what they have. They want to raise awareness and promote
research into the illness. Their privacy may be the only thing they can
really call their own, so good for them for giving up some of it.

Excuse the ingratitude - it's not exactly that - but media coverage of
celebrity illnesses often puts a kink in my stethoscope. There's always this
odd sense that breast cancer, for example, didn't exist until some
supermodel found a lump in her breast. What a ruthless bastard this breast
cancer is, invading a sculpted, perfectly adorned cover girl breast! It
reminds me of the time straight-line winds bulldozed hundreds of trees in my
part of St. Paul. A dozen cars got crushed in the process, but the TV
cameras were clustered around a Jaguar, whose flattened form demonstrated
what a godless menace this storm really was. A fury so violent it was
impartial to sticker price.

From the information Oprah has given, she appears to have chronic autoimmune
thyroiditis, the most common cause of hypothyroidism in the U.S. I'm sorry
for her. I don't wish disease on anyone, be they famous, infamous or
anonymous. Fortunately, hypothyroidism is easily treatable. There won't be
any "Hypothyroidism Survivor" pins.

But celebrity disease endorsements get out of hand when they focus more on
the diseased than the disease, or when they portray the suffering of a
celebrity as something extraordinary.

The regular people I treat just have regular illnesses and regular pain.
They don't cry in Dolby Surround Sound, they don't bleed in Technicolor.
They get crayon drawings from their grandchildren, not sacks of fan mail.
They haul their weakened bodies back and forth to clinic appointments, not
to media interviews. They struggle with all this knowing they will never
appear on "Chemotherapy with the Stars," and they get by with a fraction of
the resources and support available to the Bold and the Beautiful.

A few years ago I took care of a young man who showed up with widespread
testicular cancer. He was married, had two young children and worked
construction. He went through all the ugliness: struggled through
chemotherapy, surgery, recurrent disease. With no Tour de France victory to
lean on, he stuck it out with his kids and his wife. Sheryl Crow never
entered the picture. He never wrote a book.

The most heroic struggles often go untelevised.

~
Craig Bowron is a medical doctor and a writer who lives in St. Paul.
Reach him by e-mail at billcarlosbills@yahoo.com

 

Fibromyalgia: Brain Disorder

FiBROMYALGIA: A Brain Disorder by Cort Johnson
The research into FMS is undergoing a quite fertile period. In this paper I take advantage of several recent papers to look at different theories regarding the origin of pain in this disease. The pain FMS patients suffer from could derive from two places in the body; the central nervous system/brain or in the muscles/tendons themselves. In part one I focus on evidence suggesting that the pain in FMS is due to an oversensitized central nervous system.
Part I: Fibromyalgia is a Brain Disorder

Background: There are several different types of pain disorders; some people have 'hyperalgesia'- an increased sensitivity to painful stimuli, and some people have 'allodynia' - a painful responses to usually non-painful stimuli. FMS patients have both. Where this pain derives from is still not clear but the type of pain found in FMS gives us some clues as to its origin. Researchers know, for instance, that people with allodynia usually exhibit either increased sensitization of their peripheral pain receptors (nociceptors) (peripheral sensitization) located outside of the brain, or increased excitability of neural circuits regulating pain in the brain (central sensitization).

The signal for muscle pain travels via two types of nerve fibers to the dorsal horn of the spinal cord, where it prompts them to release pro-pain substances such as substance P and calcitonin gene-related peptide (CGRP). Substance P is a sensitizer; when it is it released into the neurons of the spinal cord it makes their NMDA receptors hypersensitive to glutamate, when released into the tissues surrounding a wound it makes them more sensitive to stimuli.

NMDA receptor activation and the concomitant release of pro-pain substances such as substance P (SP), nerve growth factor (NGF), brain derived nerve factor (BDNF), and nitric oxide is believed to drive the process of central sensitization. A recent text stated that the 'recruitment of the NMDA receptor appears to be the pivotal event in increasing the sensitivity of the nociceptive (pain) spinal circuits to (painful stimuli)". This is believed to occur when repetitive pain stimuli knock the magnesium block off the NMDA receptors (Staud 2004).

In order for a cell to respond to a substance it must have a receptor for that substance to bind to. Increased receptor activation occurs either when receptors are abnormally sensitive or when high numbers of a receptor are present. High levels of the NMDA receptor on a cell indicate that that cell is hypersensitive to glutamate; i.e. only small levels of glutamate are necessary to prod it into action.

NMDA receptors form ion channels at the excitatory synapses of these nerves. Ordinarily these ion channels are a) closed and b) blocked by extracellular magnesium ions. Two things needed to happen for these ion channels to open, first adequate glutamate needs to be present to open the channel and the membrane of the cell needs to become depolarized in order to flush the magnesium out. The negatively charged cell attracts magnesium ions which then close the NMDA ion channels. If the cell loses its negative charge, the magnesium ions will drift away. The loss of the magnesium ions allow sodium, potassium and most importantly calcium ions into the cell. Once inside the nerve cell the calcium ions activate signaling pathways that call for the production of glutamate, substance P and other pro-pain factors. The neurons in the spinal cord then send a message to the part of the brain called the thalamus which processes it and amplifies the pain response. Prolonged periods of NMDA ion channel activation and the high intracellular Ca2+ levels that accompany it can, by triggering the apoptotic process (cell suicide), result in nerve cell death.

Glutamate is the chief excitatory neurotransmitter in the brain. Ischemia (low blood flows).and low glucose concentrations can stimulate glutamate production. Ischemia is found in several neurodegenerative diseases does. Increased glutamate levels are associated with increased oxidative stress.

The controversy in the central sensitization theory in FMS comes from inability of brain imaging studies, in contrast to other pain diseases, to identify a lesion or wound in the CNS. The one other pain disease in which a CNS lesion is not found, trigeminal neuralgia, involves, interestingly, circulatory problems. In trigeminal neuralgia, increased pressure from a blood vessel applied to a cranial nerve supplying the face causes spasms of severe facial pain.

A recent study that examined how FMS patients responded to exercise provided evidence that central sensitization is at work in FMS.

Staud, R., Robinson, M. and D. Price. 2005. Isometric exercise has opposite effects on central pain mechanisms in fibromyalgia patients compared to normal controls. Pain 118, 176-184.

Many studies have shown that people usually display a decreased response to pain following exercise. The origin of this response is not known but could occur when receptors that monitor muscle movement and contraction (mechanoreceptors) activate anti-nociceptive (anti-pain) receptors. Both FMS (and some CFS patients) appear to have an anomalous response to exercise - following it they report an increased not decreased sensitivity to pain.

FMS patients have long reported that the pain they experience is not located in one place but often occurs body-wide. (Staud indicates it is more intense and widespread in the upper half of the body.) This is the first study to verify this anomaly; it found that the pain thresholds in both exercising and non-exercising muscles were increased after exercise in FMS patients. The pain intensity in the FMS patients did not appear to be particularly high - what was notable is that it increased at all.

Since trauma in the muscles results in local not systemic increases in pro-pain substances it is difficult to imagine how a peripheral process (one located in the muscles) could be at work here. This reaction, therefore, is another indication that a central pain mechanism is at work in CFS. It illustrates that a stimulus centered on one part of the body can, possibly by inducing a hyperexcitable response in the brain, can cause an aberrant response to normal stimuli across the body.

Just what is causing this hyperexcitability is unclear but there is evidence of increased levels of pro-pain substances in the brains of FMS patients.

FMS is Due to Increased Levels of Pro-pain Substances in the Brain

Increased levels of at least three pro-pain compounds associated with NMDA activation (substance P, nerve growth factor (NGF), brain derived growth factor (BDNF)) have been found in FMS. Substance P, the most well-studied pro-pain substance in FMS, is a neurotransmitter and neuromodulator that, besides pain, has been associated with anxiety, stress, neurotoxicity and nausea. Substance P is also involved in the transmission of pain impulses from peripheral receptors to the central nervous system. Releases of substance P cause the area surrounding a wound to become more sensitive to pain. Several studies have found increased levels of substance P in the cerebral spinal fluid of FMS patients.

NGF and BDNF are two neurotrophins that are increased in the cerebral spinal fluid (CSF) of chronic headache patients. Neurotrophins enhance the survival of neurons by blocking the apoptotic process (suicide). They also regulate neuronal plasticity. Alterations in the neural network (neural plasticity) could result in a chronically increased pain state. In vivo studies have indicated that nerve growth factor (NGF) increases the level of the pro-inflammatory neuropeptides CGRP and substance P as well as the growth factor BDNF. One study has found increased levels of nerve growth factor in the CSF of FMS patients.

Like substance P, BDNF appears to be both a neuromodulator and neurotransmitter. BDNF appears to enhance NMDA activity in two ways; first it enhances the production of glutamate and secondly it is able to increase NMDA receptor activity. BDNF is particularly interesting in its ability to induce a long term increase of sensitization in some parts of the brain. Unfortunately, no studies have addressed levels of this important compound in the cerebral spinal fluid of FMS patients. BDNF levels have been assessed in the peripheral blood, however/

The pain in FMS is may not simply be due to increased levels of pro-pain substances. The central nervous system also employs a battery of anti-pain substances designed to turn off or limit the pain response. These may be low in as well.

FMS is Due to Decreased Levels of Anti-pain Substances in the Brain

Sarchielli, P., Alberti, A., Candeliere, A., Floridi, A., Capocchi, G. and P. Calabresi. 2005. Glial cell ine-derived neurotrophic factor and somatostatin levels in ccerebrospinal fluid of patients affected by chronic migraine and fibromyalgia. Cephalalagia 26, 409-415. .

In addition to having high levels of 'pro-pain' factors, FMS patients could also have low levels of 'anti-pain' factors. These are compounds that inhibit the pain response in the spinal cord. One anti-pain factor called 'glial cell line derived neurotrophic factor (GDNF), which works specifically on the sensory neurons, was recently studied in relation to FMS.

GDNF is intriguing in several ways; first it belongs to the transforming growth factor family, one of whose members (TGF-B) is often increased in CFS, and it interacts with the sodium channels in cells. There is some indirect evidence of altered sodium channel activity in CFS (See A Channelopathy in CFS?)


GDNF plays an important role in the regulation of pain in the body. Since GDNF appears able to modify the expression of two NGF regulated pro-pain factors; substance P and the capsaican receptor, low GDNF levels could be at the heart of the sensitization seen in FMS. GDNF also appears to modulate the release of another anti-pain factor called somatostatin. Somatostatin is a key regulatory and anti-inflammatory peptide produced throughout the central nervous system and in most of the peripheral organs.


This study, which appears to be the most complete survey yet of anti-nociceptive factors in FMS, found that levels of both GDNF and somatostatin were markedly reduced in both FMS and chronic migraine patients. That somatostatin and GDNF levels were correlated with each other suggests that GDNF, in particular, plays a key regulatory role in these diseases.

This study suggests drugs developed to increase GDNF and somatostatin could be effective in FMS.

A Shocking 2006 Study Provides More Evidence of Central Nervous System Dysregulation in FM 

Usui, C., Doi, N., Nashioka, M., Komatsu, H., Yamamoto, R., Ohkubo, T., Ishizuka, T., Shibata, N., Hatta, K., Miyasaki, H., Nishioka, K. and H. Arai. 2006. Electroconvulsive therapy improves severe pain associated with fibromyalgia. Pain 121, 276-280.

A recent trial involving electroconvulsive therapy (ECT, i.e. electroshock) also suggests that the hyperexcitability seen in FMS is due to lack of anti-nociceptive activity. ECT was found to significantly improve the pain scores in FMS patients with severe pain. Their scores, promisingly, remained low three months after the treatment.

An examination of regional cerebral blood flows after ECT found that it significantly improved blood flows to the thalamus, a part of the brain involved, among other things, in the interpretation of sensory inputs. Chaudhuri and Behan suggested thalamic inhibition may also cause central fatigue in CFS. It is believed that  the ECT activated anti-pain nervous system pathways involving serotonin, norepinephrine or dopamine. Prior studies have found reduced serotonin levels in FMS.  The recent Pharmacogenomics studies suggest these same pathways may be involved in CFS (Click here). Once again we see evidence suggesting that circulatory problems may play a role in FMS pathophysiology.

More evidence that the brain is involved in FMS comes from a 2005 study that found it may be allied with a disease of exquisite CNS sensitization: migraine.

Migraine and FMS - two sister diseases?

Marcus, D., Bernstein, C., and T. Rudy. 2005. Fibroymalgia and headache: an epidemiological study supporting migraine as part of the fibromyalgia syndrome. Clin. Rheum. 24, 595-601

There are a number of similarities between migraine and FMS; both disease appear to involve an exquisite sensitization to stimuli, both are pain syndromes, and depression and anxiety are common in both. Although migraine is chiefly thought of as headache, recent reports indicate that increased sensitization in the periphery is common as well - almost half of migraine sufferers suffer from allodynia (a painful response to normal stimuli) and about 40% display widespread tender points. A recent study found that about 15% of migraine sufferers fit the criteria for FMS.

Chaudhuri and Behan state there are numerous similarities between CFS and migraine as well. CFS patients share with migraine sufferers such symptoms as headache, confusion, increased sensitivity to light, sounds and smells as well as exacerbated responses to serotonin. Symptom exacerbation during menstruation and muscle pain, disequilibrium and unusual sweating are also often seen in both diseases as are white brain matter abnormalities and reduced cerebral blood flows. Stress, alcohol and caffeine can exacerbate symptoms in both and transient or chronic fatigue is also common in migraine (See A Neurological Channelopathy in CFS?)

This study found that almost half of FMS patients suffered from migraine and 80% suffered from severe headaches. Most intriguingly a finding that headache preceded FMS symptoms in almost half of the FMS patients suggests that sensitization began in the brain and later spread to periphery. Other studies have found an increased incidence of another pain disease possibly allied with FMS, irritable bowel syndrome (IBS), in migraine patients. We just saw that both migraine and FMS patients have low levels of the anti-pain factor BDNF in their spinal cords.

Conclusions - Is FMS a disease in which the central pain producing pathways in the brain and spinal cord are overactive? Several studies have suggested it is; not only have high levels of several pain producing substances (substance P, nerve growth factor) been found in the CSF of FMS patients but reduced levels of an important anti-pain factor, GNDF, have as well. A successful electroshock therapy study suggested that reduced blood flows in the thalamus of the brain may be implicated as well. A possible connection with a disease of exquisite central nervous system sensitization, migraine, further implicates the brain in FMS.

But is central sensitization the answer in FMS? Recent studies that provide evidence of peripheral sensitization suggest that FMS patients may get hit from both sides - the body and the brain. See the next paper in this series for evidence that FMS is disease of the periphery, not the central nervous system

(July 2006)
           Contact: Cort Johnson at phoenixcfs@gmail.com

Tags: fibromyalgia, pain, brain, central nervous system, CNS

A Simple Service Standard

ME: A Simple Service Standard.

Greg & Linda Crowhurst Nov 20 2007 (May be reposted)

"When a well-packaged web of lies has been sold gradually to the masses over generations, the truth will seem utterly preposterous and its speaker a raving lunatic"(Dresden James) John le Carre, Absolute Friends, Coronet Books, London 2003, p.334

As only a novel can do, Absolute Friends is a gripping expose of the all pervasive influence of corporate culture upon society; the quote above is a particularly poignant one for ME sufferers.

In the history of medicine has there ever been such a "well-packaged web of lies" as the antics of the Insurance industry; its twenty-odd year attempt, against all the odds, to get ME labeled as a psychiatric condition, instead of the neurological disease that it is? Five time more prevalent than AIDS, much bigger than lung cancer and breast cancer combined, much bigger than multiple sclerosis, diabetes, heart failure, kidney disease, or cystic fibrosis, ME has wrecked our life, my wife and I, for the last 14 years. Effectively, my wife lives the life of a dying person, she is as sick as an AIDS patient close to death or a terminally ill cancer patient and has been like this every day for nearly a decade and a half; with nothing to ease the pain; just me holding her, when I can.

The Insurance Industry, in the meantime, have almost taken over the NHS and just for good measure here in the UK, the Welfare System, the Medical Research Council, all the Royal Colleges, and through the Science Media Centre, the media itself. It is hard to look at my wife in so much pain, so paralysed, so breathless, so numb, too sore to even touch; knowing full well that the reason nothing at all is being done for her, is because of the extraordinary influence of a minority group of UK mental health professionals, who have proven affiliations to corporate industry.

ME, it is to live in a world gone quite mad.

"March you get sore feet. Protest you get a bad throat……Anybody who nails the lies is a radical malcontent.(Absolute Friends p.275)"

Currently you have a name : "ME" that anyone can interpret almost anyway they wish. You have a real physical disease that is not properly validated as such and that is why people’s experience is so devastating and distressing. They have to seek someone who believes in them and their illness. They have to actively seek someone who believes in them and their illness to get any care at all. This is what people with ME are currently experiencing :

q· Denial of how very physically ill they are.

q· Playing down of the symptoms and the disease process.

q· Lack of appropriate biomedical tests.

q· Confusion over the clinical definition and a dearth of appropriate treatment of ME.

q· Potential abuse by medical professionals and carers who do not know or choose not to know the truth of this neurological illness.

q· Misinterpretation and misrepresentation of the facts of the disease.

Plus a complete lack of support; on so many levels, it is an absolutely unacceptable level of service provision to such chronically ill and disabled people. The Government funds only psychiatric research. The Medical Research Council erroneously classifies ME as a mental disorder, as does the Institute of Psychiatry.

A true ME service can only be built upon truth, not lies or silent denial. We want the best outcome potential, to:

q· Help sufferers with the things that can be helped.

q· Support sufferers with the things that cannot be helped

q· Help sufferers to live at peace, to the best of their ability, within a complex and ravaging illness.

ME sufferers want peace of mind; they want to know clearly what is wrong with them. They want to understand their symptoms, they want to know if any of them can be alleviated. They want an accurate diagnosis and a realistic prognosis; otherwise they cannot adjust their life accordingly. You cannot get on with your life, basically, if all the time you are waiting to get better. People need to be able to accept how ill they are and this is an emotional and practical process that cannot be dealt with if the illness and the full range of devastating symptoms are not validated in the first place. It is like standing on a pile of sand with no firm foundation upon which to build. Sufferers want adequate and appropriate services, in order to maximise the opportunities of their life and to minimise the stress and distress of the illness. The key factor, says my wife, is being able to accept that you are ill, there is no treatment and currently there is no cure; you have to learn how to live with that harsh reality. You also need hope that it will not always be like this, that the government will do something sincere, validating and appropriate about it, by funding biomedical research and biomedical clinics with biomedical clinicians, who will develop the service as research discovers new ways forward.

It has taken us 14 years to identify five core components that are essential in any ME service or policy statement; if a single one of them is missing then people with ME are likely to be harmed. In our opinion, any service for people with ME should honour the WHO definition of ME, should be underpinned by a clear definition and criteria, should know and understand all the symptoms and the multi-system dysfunction and should be willing to create the clearest picture of people’s circumstances, so that they can get the best treatment and support available. As these services are currently not available, they need to be created, because ME sufferers are entitled to it.

Here is a framework against which to judge any service or policy announcement, such as the recent NICE guideline in the UK.

1. Honour the fact that ME is a serious neurological disease (WHO ICD 10. G93): The WHO definition is the one piece of evidence and validation that people with ME already have, to prove they are ill with a recognised disease. Quite simply it is the truth, from which all service effort must flow. If you come from any other position, for example that ME is a psychiatric disorder, what you say may even sound reasoned, on paper at least, but all that flows from this flawed perspective will be skewed, twisted and even deadly, if it is built upon the wrong reasoning that ME is a mental health disorder.

If a service does not accept the WHO definition that ME is a neurological illness, it will allow various interpretations of what ME is, to be acceptable.

There are very real vested interests in portraying ME as a psychiatric syndrome, as opposed to a seriously debilitating physical illness, with multi system dysfunction, as highlighted by Ian Gibson MP in his Parliamentary Inquiry (2006). Ifpractitioners do not believe ME is a physical neurological illness, then all the patient’s symptoms can be misinterpreted and not honoured ; this is so dangerous.

2. Respect the fact that ME is a multi-system disease affecting all systems of the body and each person’s individual experience of this disease. Over and over again one reads about how incredible it is that ME patients manage to survive at all, so dreadful and serious are the symptoms. Patently though, this is not being respected by policy makers; who, having considered the biomedical evidence, would dare recommend rehabilitation or Graded Exercise Therapy as THE core treatment strategy, as NICE do, in their recently published Guideline? Only by taking into account the full biomedical research can a full and true picture of the severity of the illness and symptoms in ME, be arrived at and a safe care pathway created.

3. Validate the ME sufferer's experience by using appropriate criteria for assessment and adequate biomedical testing using up to date equipment and methods. The Byron Hyde, the Sarah Myhill, the Paul Cheney; the level of assessment and testing that they carry out in their clinics - this must be made available to ME sufferers across the board. What other illness of this severity or disability would settle for less?

By not using a clear definition and by not advocating appropriate clinical criteria and state of the art biomedical testing, a service will only spread confusion for doctors patients and paramedical staff alike about what is ME. Clear diagnostic criteria, such as the Canadian Criteria, are essential for doctors to be able to properly identify the disease and not confuse it with "fatigue" conditions.

4. Identify the full need and aim to treat/support the whole range of symptoms, with honest prognosis. Survey after patient survey paint an horrific picture of multiple serious symptoms that affect all the body systems; ME sufferers are in sheer physical torment most of the time. Can these symptoms be treated? We don’t know. After 14 years of unbelievable suffering, my wife is more or less left to just get on with it. Patients and medics alike will not understand the experience of people with ME fully without proper emphasis and guidance on the vast range of symptoms. Proper aids and equipment will not be developed or provided unless there is a complete documentation of the often confusing symptoms. In order to have the symptoms of ME fully treated and honoured, full biomedical clinics and clinicians need to be in place. The psychiatric skew on this illness needs removing as it badly influences the perception and the reality of service provision.

5. Competently provide ongoing support: It is frightening how little support people with ME receive. These seriously ill and disabled patients every day have to put up with clumsy or inadequate, if any, support that does not take into account the light, the touch, the sound, the drug and chemical sensitivities. The pain, the paralysis, the numbness, the inability to bear being touched. The screaming crawling sensations, the itching burning agony, the inability to breathe, to talk, to think; and the post exertional malaise.

Support needs are so complex, there are so many issues on so many levels to take into account, especially with severe ME. On our website: www.metrainingco.org.uk we have posted a detailed guide to supporting the severely affected. Competent support can only be in place if the illness is recognised, defined, outlined fully, tested in depth and treated appropriately. It can only be available if there is a genuine commitment to training based on the four previous criteria. It will only be available when ME is fully honoured as the severe, neurological, multi-system, dysfunctional, disabling disease that it is. It will only be available when there is appropriate investment to provide for it.

Conclusion: People with ME need to set the agenda, not government or the insurance industry. We desperately need to reclaim our power, sufferers and carers, and take a stand against the blatant lies, the widespread injustice and the distortion of the truth of ME.

We need to build proper services that honour, respect, validate, treat and support people with ME today.

<a href="http://technorati.com/tag/CFS" rel="tag"><img style="border:0;vertical-align:middle;margin-left:.4em" src="http://static.technorati.com/static/img/pub/icon-utag-16x13.png?tag=CFS" alt=" " />CFS</a>

Tags: CFS, service, biomedical, WHO, ME/CFS, CFS/ME, injustice, lies, support