Saturday, December 8, 2007

CFS Myths

A great little handout (with ample research cites) for those people who think you're just lazy or crazy.

 http://www.aacfs.org/images/pdfs/myths.pdf

Myth 1: There are no objective abnormalities.

Myth 2: The only problem is your "perception" that you're sick.

Myth 3: Other research groups can't duplicate findings.

Myth 4: CFS affects only Yuppies and is rare.

Myth 5: Counseling can cure CFS.

Myth 6: Patients are lazy or malingering.

Myth 7: CFS is caused by EBV.

Myth 8: CFS can be cured with exercise.

Myth 9: CFS is difficult to diagnose.

As I've said before, CFS is so easy to diagnose if you know what you're looking for that patient support groups can do it with near-100% accuracy. 

One of my doctors was convinced that I could not have CFS because I had a normal EBV test; that was the only thing he "knew" to look for (and, in fact, it was erroneous information).  One of the original CFS patients was EBV-negative at the time of the epidemic, and remains EBV-negative to this day, proving that EBV is not the cause -- it's the result of your battered immune system not being able to control a virus that's present in nearly every adult (but not 100%).

I'd also like to comment on Myth 3, reproducibility of research results.  A privately-funded researcher found a virus in all the blood samples she was given.  CDC/NIH was supposed to confirm the findings.  They repeatedly failed.  Eventually it was discovered that they were not following the same procedures; they'd specifically been warned the virus was fragile and would not withstand freezing ... and they'd frozen the blood samples!  An outside researcher summed up, for the author of Osler's Web, "They didn't WANT to find anything."

And this is the problem.  Someone who wants to prove that CFS=depression can load up their research pool with people who have only those symptoms that CFS and depression have in common, i.e., people who were misdiagnosed with CFS and actually have depression.  Thus, they cannot reproduce the results of a group of post-viral CFS/ME patients, who have something else entirely than the patients they're studying.  To someone who hasn't thoroughly analyzed the situation, it looks like theresults aren't reproducible; to someone who carefully examines the make-up of the patients, it quickly becomes apparent that you can't reproduce the results of one disease by studying people with another disease.

Harvard's Dr. Komaroff has counted 4000 international studies finding objective abnormalities.  Don't let anyone tell you there's no way to prove someone is suffering from CFS.  There are plenty of ways to prove it ... if you know what to test for.  But if you're testing for things not on that list, then you shouldn't be surprised that the results are normal.  You won't find what you're not looking for.

Thursday, December 6, 2007

Help! I'm not feeling better

http://www.cnn.com/2007/HEALTH/12/06/ep.symptoms/index.html


Help! I'm not feeling better
Empowered Patient, a regular feature from CNN Medical News correspondent Elizabeth Cohen, helps put you in the driver's seat when it comes to health care.
Dr. Gail Gazelle, a patient advocate, says doctors can be quick to dismiss complex cases as psychological.

ATLANTA, Georgia (CNN) -- When teacher Karen Myhre fell to the floor after taking attendance one morning, her third-graders knew exactly what to do: Ring the bell to alert the school office, and run to get the school nurse.  The children were well-trained because Myhre had fainted in class before -- she'd also fainted in the principal's office, at the copier machine, at church, at a pizza restaurant and at home alone with her two small children.

Karen has seen an internist, a neurologist, a neurosurgeon, an anesthesiologist, a cardiologist, a psychiatrist, a psychologist, an electrophysiologist and an integrative medicine specialist, not to mention countless other physicians during three hospital stays, and she's still fainting. "It's extremely frustrating, and it's exhausting," Myhre says.
Myhre's experience is far from unique. Back pain, fainting, muscle aches and dizziness are just some of the problems doctors seem to have a hard time solving.
To help shed light on what to do when it seems no one can help, we put Myhre on the telephone with two physicians, Dr. Michael Victoroff and Dr. Gail Gazelle. Both are patient advocates; people pay them to help navigate medical mazes when they're not getting answers on their own. The following is their edited conversation with CNN medical correspondent Elizabeth Cohen, and a list of tips for what to do if you're in a similar situation.

Myhre: Thank you for trying to help me.

Gazelle: The first thing you should know, Karen, is that you're not alone. You've had to walk through the mud and the mire of the medical system -- neurologist, psychiatrist, anesthesiologist -- this is quite a list here. This scenario is all too common. There are some problems the medical profession is ill-equipped to manage andtreat. Fainting is one of them.

Cohen: Karen, tell us how this all started.

Myhre: It started with a migraine in September last year. I'd never had one before. I went to my internist and he gave me a shot of Demerol [a narcotic pain reliever] and Phenergan [an anti-nausea drug]. Then the next day I went into a cold sweat. I started shaking. I couldn't get words out. I was confused. I could hear people talking and I couldn't respond. I was in a wheelchair, and my hands contracted like a child with cerebral palsy. I was admitted to the hospital. They said it was serotonin syndrome -- a reaction between the Demerol and the Phenergan with the [antidepressant] Zoloft I've been taking for years.

Victoroff: Karen, tell me about the timing of all this. When did you have these symptoms?

Myhre: Almost exactly 24 hours after I got the Demerol and Phenergan shot.

Victoroff: Serotonin syndrome happens while the drugs are actively metabolizing. By 24 hours, I think the Demerol and the Phenergan would have already been metabolized. I don't know. But I'd want to grab a DPharm [doctor of pharmacy] and say, "Listen to this story. Does this sound right?"

Karen continued having migraines for several months. In January 2007, she had debilitating spasms in her neck. A neurosurgeon diagnosed bulging discs, and the pain went away with radiofrequency ablation, a process that destroys the nerves with heat. In May, she had her first fainting episode, quickly followed by several more. Karen went back to her family doctor.

Cohen: What did he say?

Myhre: He said, "Nothing's causing you to faint. You're making yourself faint intentionally. You're making yourself do this." He referred me to a psychologist.

Gazelle: This is what doctors do sometimes. If something doesn't fit into a nice, neat medical box, they say, "It must be psychological."

Victoroff: If your doctor had done even a cursory literature search, he would have seen there are 492 diseases that could cause fainting. How could he tell you you're just crazy? Had he ruled out all 492 other causes?

Later that month, Karen was admitted to a major research university for further testing. They diagnosed orthostatic hypotension -- low blood pressure when standing, and prescribed pindolol and Florinef, which still don't stop the fainting episodes.

Victoroff: Did you ask the doctors in the hospital, "Out of nowhere, I have these migraines and this nerve thing in my neck and the fainting. Could they all be related?"

Myhre: My husband, Jay, asked that -- could one be causing the other? And the neurologist was very quick to say, "No, no, it doesn't work that way." The neurologist had three residents with him, and they all nodded their heads. Jay thought, "Who am I to go up against four neurologists?"

Victoroff: In that situation, you can ask, "Can you help me understand why they're not connected?" Ask them what exactly makes them think that.

Myhre was discharged from the hospital in May, and in June her internist reduced her dose of Florinef, a drug that causes the kidneys to retain sodium and acts as a replacement for cortisone when the body doesn't produce enough on its own. Then, in August he increased the Florinef. In July, he took her off pindolol, a drug used to treat high blood pressure, and started her back up on it three days later. That day, she fainted in church. Her internist told her the problem is "severely dysfunctional coping skills." She fired him, and went to see a physician who specialized in integrative medicine. Myhre says under his care, her fainting episodes have decreased, but she still has them and is still extremely fatigued.

Cohen: So Karen, right now, how many different drugs and supplements are you taking?

Myhre: Florinef, Provigil, Cortef to increase cortisol levels, Yasmin [a birth control pill] to even out hormone levels throughout the month, and Vitamin B12 shots, Vitamin D, potassium, magnesium, and evening primrose oil.

Cohen: How many different doctors prescribed these?

Myhre: Five.


Here are some of the tips the doctors offered Myhre
Cohen: Dr. Victoroff, Dr. Gazelle -- if you were Karen's old college buddy and she called you up asking for advice, what would you tell her to do at this point?

Victoroff: You know how in old mysteries, they would say "cherchez la femme," meaning when you want to find the cause of a problem, look for the woman. In medical mysteries, we say "cherchez la drug." Doctors simply don't always look for drug side effects or interactions. So you should go on the Internet and look yourself. I've been looking them up as we've been talking, and some of them can cause dizziness. Print these out and bring them to your doctor. Ask, "Why am I on this drug and when can I come off it?"

Gazelle: Karen, you mentioned you had a neurologist for your headaches who you really liked. Stick with her as your ally, as the person you can bounce ideas off of. What you need in this situation is a doctor who says "I'm going to stick with you." It's the "helm of the ship" model.

Victoroff: That's right. Regardless of their medical specialty, ask the doctors you think are good -- like the neck guy -- what they think you should do.

Victoroff: You've heard of the fog of war? Well, there's such a thing as the fog of the examining room. Let me tell you about a friend of mine. He's a doctor and a lawyer. Recently he had a health problem and when he went into the examining room he couldn't remember any of his questions. Your IQ goes down 50 points when you walk into that room. So write down your questions beforehand, and bring someone with you.

Gazelle: Keep looking for things that will make you feel better, but you may need to quiet the need to look for an answer. It may be that the medical profession will never find a cause for your problem.

* * *

As Dr. Greensmith points out (see earlier post), fatigue is a symptom of many conditions.  Mere fatigue is not indicative of depression.  Unfortunately, many doctors, upon hearing the word "fatigue", leap to the diagnosis of depression, regardless whether it is appropriate or not.  There are emotional components required to make a depression diagnosis; if the patient doesn't have at least one of those, it is not depression.  Period.  Any doctor who does not know emotional components are required to make the diagnosis is clearly unqualified to make an accurate depression diagnosis. 

Personally, I believe no one except a licensed mental health professional should be allowed to make a mental health diagnosis; psychs don't practice medicine, MDs should not practice psychiatry.

As Dr. Gazelle points out above, doctors are quick to slap a psychological label on complex conditions.  If they were prohibited from making that diagnosis without consulting a specialist, they would be forced to look harder to find a physical cause for the symptoms.  They would have to test for those 492 other causes that can produce fainting, or the zillions of diseases that cause fatigue.

In the past, MS and polio-- diseases now considered to be "real" and with an unequivocally physical origin -- were dismissed as psychological because technology didn't exist to pinpoint that physical cause.  Easier to blame the patient than to say "I don't know".  Technology is now catching up to CFS and fibromyalgia; eventually, the medical profession will have to admit that they were wrong in slapping patients with "it's all in your head" when the problem was never in the patient's head -- it's in the doctor's head in not being able to think outside the box.

Depression does not start with a 105 fever.  It does not cause sore throat, or rash, or swollen glands, or exercise intolerance/post-exertional malaise.  A doctor who knows what objective symptoms to look for would never confuse depression and CFS. 

In my case, every doctor since 1988 except one has concurred with the CFS diagnosis.  That one chose to ignore every bit of evidence that he was wrong: two specialists who knew how to diagnose CFS and two specialists who knew how to diagnose depression.  When given, in writing, the advice of CFIDS.org on what tests would be abnormal, he refused to order those tests.  The question must be asked, "what would it have hurt?"  For a few bucks, he could have humored the patient; if the test came back negative, it would have proved that I didn't have CFS.  He didn't want to take the risk of being proved wrong.

Such closed-mindedness has no place in the medical profession.  Doctors should be curious and eager to get to the bottom of a mystery, not quick to dismiss a patient's symptoms as psychological because a simple solution doesn't work.

A specialist is a specialist BECAUSE he knows more than the average doctor about certain diseases.  If the PCP does not agree with the specialist's opinion, he should send the patient to another specialist for a second opinion.  If two specialists agree on the diagnosis, the PCP should consult with them to understand why that is the diagnosis and not the one he prefers.  He might learn something.

If treatment isn't working, then Dr. Groopman suggests re-examining the diagnosis.  Don't blame the patient.  Don't continue the same treatment that's been proven useless. 

The patient deserves a doctor whose primary concern is getting her well,not one whose primary concern is protecting his own ego.  Any doctor who selfishly puts himself ahead of the patient's well-being doesn't deserve to be your doctor.  He does deserve to be reported to his supervisors as someone whose prejudices are putting the medical group at risk for a major malpractice lawsuit.

 

Wednesday, December 5, 2007

Latest from One Click

READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk


1.  UK Paediatricians Challenged to Debate.
Royal College of Paediatrics and Child Health challenged to public debate on reliability of medical evidence in legal proceedings. RCPCH members mislead the public and financially benefit from alleging child abuse. By John Hemming MP

2.   Family Destroyer Dr David Southall Struck Off.

Munchausen Syndrome by Proxy/FII fan Dr Evan Harris MP (Liberal Democrat, Oxford and Abingdon) outed by One Click. Dr David Southall found guilty of serious professional misconduct and struck off medical register. Southall's deep-seated attitudinal problems revealed. From BBC NEWS

3.  Medical Profession Incompetent And Unethical.
Joint medical incompetence study by Harvard Medical School, Yale University School of Public Health and University of Melbourne Center for Medical Research published today in Annals of Internal Medicine. Focus of current medical practice geared toward commercial profitability. Patient safety and best interests sacrificed for greater profits. By Vera Hassner Sharav, AHRP


4.   Bush Resumes Open-Air Bio Weapons Testing?
Pentagon appears poised to resume open-air testing of biological and chemical weapons. Pentagon gearing up to fight and 'win' biological warfare pursuant to two Bush national strategy directives adopted in 2002 without public knowledge and review. By Sherwood Ross, SCOOP! Independent News, New Zealand

5.  Children And Elderly Abused By Medical Profession.

Drug manufacturers ruthlessly targeting children and elderly as easy markets for dumping their most hazardous, incapacitating, life-shortening toxic drugs which should never have been approved for marketing. See Wall Street Journal and BBC Panorama. By Vera Hassner Sharav, AHRP

6.  Australia - Gardasil Vaccine Adverse Reactions Roll In.
Melbourne school girls suffering dizzy spells and paralysis from Gardasil vaccination. Small randomised trials all sponsored by vaccine manufacturer. Australian Health Department refuses to provide details of seventeen girls per week experiencing adverse Gardasil vaccine reactions.  By Melinda Tankard Reist and Dr Renate Klein, NEWS.com.au

READ THE NEWS ON ONE CLICK
http://www.theoneclickgroup.co.uk

* * *

That the medical profession is incompetent is no news to the CFS/fibro community.  Almost every patient can tell horror stories about doctors who ignored test results; in most cases that I hear about, the doctor initially diagnosed depression, and when they got a test result that proved there was a physical problem, they continued treating the patient for depression instead of whatever the test result pointed toward.

Hopefully with respected names like Harvard and Yale behind it, this study will cause the medical profession to sit up and take notice in ways that patients cannot effectuate.

If you go to the One Click site and read the entire article, it seems that although most doctors "know" they should report malpractice, very few do.  I've seen that in my own situation: one doctor asked me "were they trying to kill you?" when I got a prescription that never should have been given to someone with my history of drug reactions and another doctor was horrified that I'd been left to endure Level 10 pain with no medication, yet, even after telling me that these doctors screwed up badly, no report of their malpractice was made to the Medical Board by the doctors who noted it. 

If you check the website, none of my doctors has any history of complaints, even though I know that I made complaints about them.  Why?  The letter I received from the Medical Board makes it clear that they don't investigate complaints that did not result in loss of life or limb.  That my health is permanently damaged is not enough; as low a quality of life as I have, I am still alive, and that's all that counts in deciding whether to investigate malpractice!

Unless and until doctors are called to account for the patients who will spend the rest of their days in bed because of uninformed advice to exercise, and patients who deteriorate due to years of treatment for the wrong condition, this incompetencewill simply continue.

It should, again, be noted that I told my new doctor in 2000 what my diagnosis was, and that it was received from a virologist.  I provided him with a written report from a rheumatologist confirming that diagnosis a few months earlier.  This was not a case where he accidentally made the wrong diagnosis.  This is a case where he intentionally disregarded two expert diagnoses and substituted the one he wanted to make.  There is absolutely no excuse for his misdiagnosis, because he was never asked to make a diagnosis -- he was told what the diagnosis was.  The Medical Board did nothing to discipline him for his refusal to accept the advice of two specialists.  And when two psych evaluators confirmed that his diagnosis of depression was wrong, he decided that he knew more than them, too.

Monday, December 3, 2007

The High Cost of Chronic Pain (excerpts)

http://www.webmd.com/pain-management/chronic-back-pain/cost-of-pain?page=1

According to the American Chronic Pain Association, pain is the No. 1 cause of adult disability in the U.S. At least one out of six people live with chronic pain.

A 2003 study published in The Journal of the American Medical Association put the cost at $61.2 billion per year. But that's only the money drained from U.S. businesses because of productivity lost from employees in pain. It only included arthritis, back pain, headache, and other musculoskeletal pain; other kinds of chronic pain were excluded.

And while looking at pain's bottom line is important, no price can be put on the enormous suffering it causes.

"The costs are incalculable," says Christopher L. Edwards, PhD, assistant professor of psychiatry at Duke University School of Medicine.

Pain has a high social cost for the sufferer, too. Because pain is a personal and subjective experience, it can lead to problems with family and co-workers. While you may be in terrible distress, the people around you just can't see or feel what you're going through.

"I think people in pain sometimes get unfairly dismissed by family and co-workers" Robert Bonakdar, MD, tells WebMD, "especially when they don't have an outward sign of suffering, like a cast or a bandage." Bonakdar is the director of integrative pain management at the Scripps Center for Integrative Medicine, La Jolla, Calif.

Cohen says this is toughest for people who suffer from painful syndromes, like fibromyalgia, irritable bowel syndrome (IBS), and complex regional pain syndrome.

"There's much less sympathy and understanding for these elusive syndromes," says Cohen. While Edwards says that the treatment for pain can often lead to as much stigma as the pain itself.

"When people hear that you're taking a narcotic pain reliever like methadone," he says, "they associate it with addicts." That can lead people to make some very wrong assumptions about you."

Edwards adds that there's confusion between dependence on a drug and addiction to it.

"If you take any drug regularly, your body will get used to it," he says. "That's called dependence and it's very different from addiction. I'm an asthmatic and I'm dependent on my inhaler. Without it I'm on the floor gasping. But that does not mean I'm addicted to it."

But pain specialists agree we haven't done enough.

"Pain management in the 21st century is more than just improving your rating on a [1 to 10] pain score," Cohen tells WebMD. "It's about how well you can function, your mood, your and your quality of life." It's about allowing someone to be active and productive again.

"I see patients who say that treatment has reduced their pain from an 8 to a 4," says Bonakdar. "That's great, but they're still depressed, they can't sleep, and they're mentally foggy. We need to treat the whole person, not just the pain."

As a pain sufferer, you have to speak up. The costs of pain -- emotionally and financially, personally and societally -- are simply too high to ignore. So tell your doctor about your pain. Explain how it limits you. If your treatment isn't working, ask what alternatives you can try.

"The bottom line is that people need to take a more active role with their health care providers and demand treatment," Cowan tells WebMD. "You have a right to have your pain managed."

Relationship between aerobic fitness and quality of life

Relationship between aerobic fitness and quality of life in female
fibromyalgia patients.

Clin Rehabil. 2007 Dec;21(12):1109-13.

Ayán C, Martín V, Alonso-Cortés B, Alvarez MJ, Valencia M, Barrientos MJ.

Area of Preventive Medicine and Public Health, Department of
Physiology, University of León. cayan@edu.xunta.es .

PMID: 18042606


Objective: To determine whether there is a direct link between
quality of life and aerobic capacity among female fibromyalgia patients.

Design: Cross-section study.Setting: University of León.

Subjects: Twenty-nine women belonging to the León Fibromyalgia and
Chronic Fatigue Association.

Main measurements: Aerobic capacity and quality of life were measured
by means of the Six-Minute Walk Test and the Fibromyalgia Impact
Questionnaire. Outcome measures included heart rate and rate of
perceived fatigue and dypsnoea.

Results: The average distance walked was 432.8 (61.2) m and the total
average Fibromyalgia Impact Questionnaire score was 47.5 (18.9). Only
item 1 of the Fibromyalgia Impact Questionnaire, physical function,
showed any statistically significant link with the distance walked,
which had no statistically significant relationship with any of the
variables studied.

Conclusion: The physical fitness of women with fibromyalgia, as determined by the Six-Minute Walk Test and the Fibromyalgia Impact Questionnaire, has no direct relation with quality of life as the patients perceive it.

* * *

In other words, the next time your doctor gives you the "simple solution" that all your problems can be cured by getting back in shape, you can tell him research has proven him wrong.  Fibromyalgia and CFS are not caused by deconditioning -- the deconditioning is usually a result of the disease making it impossible to continue your former activity level.

It's the easiest answer to give a patient, but it's not the best one.

Laboratory Tests in CFS

From Susanna Agardy <susannaa@dodo.com.au>:


LABORATORY TESTS IN ME/CFS: ELEVATED INSULIN LEVELS, ETC.

Susanna Agardy

Many ME/CFS sufferers are told at some stage, 'all your tests are
normal' following some basic tests. The myth is confirmed by official
guidelines which state that ME/CFS is to be diagnosed by exclusion,
it is unexplained and there is no point in doing further tests.  How
is it then, that I have so many significant abnormal lab. test
results? No doctor has tried to exclude me from the diagnosis of
ME/CFS on the basis of these tests.  On the contrary, they have been
regarded as a confirmation of the condition.  I am especially
concerned that the CDC confirms that there are no tests worth doing.

My most outstanding tests are as follows:

1.  Elevated Insulin Levels. My serum insulin as measured by glucose
tolerance test (GTT) 1hour 20 minutes after ingestion of glucose was
89 mIU/L. (reference range: 0-20)  Four and a half hours later it was
33. I heard another sufferer talk about her similar result.  Her
doctor had said, 'this is not possible, there must be a mistake'. A
serum insulin test without glucose, some years later, was 21
uU/ml  (reference range: 2-10).  I have not made a habit of doing the
GTT because the ingestion of glucose can make ME/CFS sufferers feel
quite unwell.  I have been given dietary advice on the basis of this result.

Some doctors who treat ME/CFS routinely carry out insulin level
tests.  One Australian doctor who has written a book about ME/CFS
states about his patients: "…virtually all patients tested who have
CFS/ME have demonstrated elevated insulin levels, such a finding
being associated with symptoms related to altered glucose levels and
tolerance and disturbed neurotransmitter function resulting in
neurological symptoms.'   'It is noted that these symptoms may not
always be due to a low blood glucose but to surges in insulin
levels.'  (p74, (1))

How is it that we hear nothing of this phenomenon from official
sources such as the CDC?  Interestingly, the Mayo Clinic site on
Causes of Chronic Fatigue Syndrome, states 'hypoglycemia' as a
possible cause of CFS but says no more abut it.
http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=3 .
Glucose tests are mentioned in CDC's minimum battery of lab screening
tests in its advice for doctors, probably with a view to excluding
diabetes but there is no mention of test for insulin levels. The
Pharmacogenomics abstracts, based on the Wichita study in which CFS
and 'fatigued' patients underwent a battery of tests make no mention
of the subject as far as I can tell. How widely is this test administered?

2.  Functional Liver Detoxification Profile.  This test seems to be
even more rarely mentioned in relation to ME/CFS.  I had
unequivocally abnormal results according to this test, especially low
levels of glutathionation and gycination and high free salicylic
acid.  The test involves taking caffeine tablets which created
elevated heart rates, sweating, trembling, etc for a few hours.  I am
aware of other ME/CFS patients with abnormal results and similar reactions.

3   Low Potassium Levels.  My red cell potassium level was on the
very low side of normal.  24 hour urine test confirmed an imbalance
in potassium and sodium, with excessive excretion of potassium,
indicating channellopathy (1).  Potassium and ion channel activity
problems have shown up in the CDC's Wichita Study.  The
Pharmacogenomics abstracts states that 'Potassium and free thyroxine
(T4) figure prominently' and ion channel problems are also referred
to.  http://co-cure.org/pharmacogenomics.htm#A6.  (It has been
necessary for me to take thyroxine supplementation for many years.)

4.  Melatonin.  I mention this because melatonin supplementation is
often recommended to ME/CFS to aid sleep.  Recently I had salivary
melatonin tested.  The midnight test result was 'near toxic
range'.  The morning test was reported as 'grossly elevated', over
twice the reference range limit.  I am not taking any
supplementation.  Again, I am not alone with these results.  I am
surprised that recommendationsare made to take supplementation
without any mention of testing.

The above tests, especially the glucose tolerance test are generally
accessible, although cost may be a barrier for some of them. Why do
they so seldom rate a mention?  Even though these tests they may not
be diagnostic, people suffering from ME/CFS or suspected of it are
entitled to know if they have abnormal results and to have such
results considered in their treatment. There are of course, many
other tests which are often abnormal in ME/CFS and are not
mentioned.  I am only commenting on my own results which are
confirmed by anecdotal or other evidence.  I have not had any
neurological test, for example.  Failure to administer tests to
sufferers serves to perpetuate the perception that there are no physical abnormalities in ME/CFS and the judgement that 'it's all in your head'. 
If doctors repeatedly found certain abnormalities in at
least some ME/CFS patients, this might at least contribute in a
practical way to taking the 'unexplained' out of the definition.


1. Chronic Fatigue Syndrome / ME Turning Disability Toward Ability.
Dr DP Lewis   CFS Discovery Pty Ltd  Donvale Vic 3111 Australia
2003.  www.cfsdiscovery.com.au/  (Takes into account the work
of  Prof. De Meirlier, Chaudhuri, et al.)

* * *

Like Susanna, I have a lab test result that is so far off that they were convinced it was lab error until the re-test was even higher (6x normal value).  Seeing an abnormal test result would require the SSDI judge to acknowledge that CFS isn't another word for "fakery"; he has never referenced that test either in the transcript or the written decision; if he acknowledged its existence, he'd have to admit that I have proof of something very wrong and deserve disability benefits.  Much easier to continue to deny benefits on the myth that "all tests are normal", without admitting that there's one test that's not even close to normal than to re-examine his beliefs about what CFS is.

The fact is, there are a number of tests, primarily of neurological and immune function, that prove there's something very wrong.  Those tests are not part of the basic first-round blood tests, so it's easy for a doctor who's not interested in having to re-examine his beliefs about CFS to perpetuate the myth by telling the patient "you don't need that; all tests are normal, so there can't possibly be anything wrong with you physically".
 
CFS is only "unexplained" because many doctors don't look further than the first normal test.  There are doctors who've looked further -- specialists who've noticed that every symptom on the list is neurological -- and have reasonable medical explanations for CFS.  There are medical explanations for the symptoms, but none of those explanations will be found in the standard first-round blood tests.  They'll be found with thinking outside the box, that the standard tests are just a starting point, not an end-all.
 

Sunday, December 2, 2007

Prayer and Meditation Days

Dear Friends

Merry Christmas! I am forwarding to you details regarding a new ME/FM
event that has been launched, which may perhaps interest members of your organization.

The *World ME/FM Prayer and Meditation Day* takes place on the first
Monday of every month

between 12 noon and 12-30.

I have attached below, some details for you, which may be useful for
e-mailing to friends and associates or for news bulletins.

With warm regards

Suzanne Olivante

_ _

_ _

_PRESS RELEASE_

_ _

*WORLD ME & FM PRAYER AND MEDITATION DAY*

*1st Monday of every month - between 12 noon – 12.30 *(in whichever
time zone you are in)**

_ _

* *

In September 2007 a new monthly *World ME & FM Prayer and Meditation*
*Day* was launched. Now commonly known by its nickname *‘time2link’*,
this designated day is a special time for people to unite, on the first
Monday of every month, when the intention is to focus on the well being
of those who have ME and/or FM. You are warmly invited to join in, from
the comfort of your own home, by ‘linking-in’ using whatever form you
prefer; perhaps through prayer, meditation, visualization or by simply
making a wish. There is no need to register or attend a group. Only your
thoughts and intention are needed, be it for a few seconds, 10 minutes,
30 minutes…

This unique global link is a wonderful opportunity to care for and
support our friends and other sufferers around the world. Being an
interfaith event, participants from all religions/traditions and also
non believers are all welcome. It is a time to set aside our
differences, in the knowledge that we all share similar symptoms with
our health conditions and wish each other well.

Across the miles others will be linking in at midday in their own time
zone, making the first Monday of every month an amazing day of worldwide
group support. Don’t worry if the chosen time is unsuitable for you,
just link-in whenever you can during Monday. Participants have already
commented on how peaceful, happy and energized they feel during and
after the time2link and also how they look forward to the event.

For those who are keen to get involved there is a special theme for the
first link of the new year on 7 January and details can be found at the
weblog in mid December or please send an e-mail/SAE for details.

The blog for this event is a space for participants to share, express
and connect with other linkers. It will also feature inspirational
writing and in January the *2008 time2link Poetry Competition* is being
launched which serves to build on this theme and encourage a little self
expression, but just for fun! There is a small prize of a £10 Amazon
Gift Certificate up for grabs too. There is no set theme for the
competition and the closing date for entries is 30 April 2008.

Entries can be sent via post, e-mail or you are welcome to post them
onto ourtime2link, the community site. Please consider whether or not
you would like to protect your work with a copyright and also let me
know if you would like your poem to appear on the community site and I
will gladly post it for you. To find out more about copyright,
information can be found on the net, for example
http://www.copyrightservice.co.uk

I do hope that you will join us all and may I just say a huge thank you
in advance for linking-in and a

Merry Christmas too!

Wishing you well

Suzanne Olivante.

Humiliation is almost worse than disease

http://www.signonsandiego.com/uniontrib/20071202/news_1m2braun.html

The woman in the article doesn't have CFS, but faces the same public opinion obstacles we do, of people assuming the worst.

"She can do everything but run, walk down stairs without using the handrail, and withstand the harsh glances and hurtful remarks of strangers.

“What I can't deal with, in what may be my final days walking, is having to worry every minute about being humiliated, because it's happened so many times,” she told me. “I need something to make me feel OK about being in public. It's really not going so well.” "

“People have been violent with me, mainly women,” she said. “There's just a lot of hostility.”

On other occasions, his mother said, Zach has told her accusers: “You don't know my mom; she has a disease”; and “You don't know what you're talking about, lady.”

"But that mindset, Rose said, has her afraid to leave home many days. Friends have suggested she get an assistance dog, or a wheelchair, to alert strangers to her disability.

“I'm not going to throw myself into a wheelchair to make everybody else happy and comfortable,” she said. “What do I do? Do I wear a T-shirt that says: I'm not drunk? A tattoo on my forehead? Do I get a megaphone and go into a store and say, 'Hey, everybody, before you judge me, I just want you to know . . . ' ? ”

As I predicted, I had no good advice for her. It's easy to tell someone not to care about what other people think. But just try doing it yourself some time."

* * *

Like Ms. Rose, I know there's probably a wheelchair in my future, but I'm in no hurry to rush that date just to prove to people that I'm disabled.  So, I deal with the assumptions that when I say "I can't", it means that I'm lazy or manipulative or just want something for nothing; assumptions that probably wouldn't be made if I were in a chair.  For me, it's a matter of pride to stay upright as long as possible; if I were lazy or manipulative, I'd've opted for a wheelchair (and instant sympathy it creates) long ago instead of struggling.

Instead of patients having to pretend they don't care what strangers think, maybe strangers should stop assuming the worst.  Ask politely WHY I can't; the answer may surprise you.  You might come away with a whole new respect for how much I can do against the odds, insted of berating me for not being able to do more.

It was never my goal to be SuperCrip.  I didn't run marathons before, I'm not going to do it now just to prove that disabled people can do anything.  Because the fact is, some of us can't do that stuff without putting our life (or at least our independence) on the line.  I know CFS patients who became bedridden after exercising; I don't intend to be one of them.  I much prefer living on my own (even if the house is a little messy) than being in a nursing home having to eat what they tell me, when they tell me, dependent on other people for a lot more than I am now.