Saturday, March 8, 2008

CFS is Heart Failure Secondary to Mitochondrial Malfunction

Chronic Fatigue Syndrome is Heart Failure Secondary to Mitochondrial Malfunction <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />

from Dr. Sarah Myhill, <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />UK physician:  http://www.drmyhill.co.uk/article.cfm?id=373
Another document by Dr Myhill with diagrams: http://www.ei-resource.org/Articles/cfs-art20.asp


Two papers have come to my notice recently which make great sense of both my clinical observations and also the idea that CFS is a symptom of mitochondrial failure. The two symptoms I am looking for in CFS to make the diagnosis is firstly very poor stamina and secondly delayed fatigue. I think I can now explain these in terms of what is going on inside cells and the effects on major organs of the body (primarily the heart). More importantly, there are major implications for a test for CFS and of course management and recovery.

If mitochondria (the little batteries found inside every cell in the body) do not work properly, then the energy supply to every cell in the body will be impaired. This includes the heart. Many of the symptoms of CFS could be explained by heart failure because the heart muscle cannot work properly. Cardiologists and other doctors are used to dealing with heart failure due to poor blood supply to the heart itself. In CFS the heart failure is caused by poor muscle function and therefore strictly speaking is a cardiomyopathy. This means the function of the heart will be very abnormal, but traditional tests of heart failure, such as ECG, ECHOs, angiograms etc, will be normal.

Thanks to work by Dr Arnold Peckerman, (see the complete study at this web address):

www.cfids-cab.org/cfs-inform/Coicfs/peckerman.etal.03.pdf  

we now know that cardiac output in CFS patients is impaired. Furthermore the level of impairment correlates very closely to the level of disability in patients. Dr Peckerman was asked by the US National Institutes of Health to develop a test for CFS in order to help them to judge the level of disability in patients claiming Social Security benefits. Peckerman is a cardiologist and on the basis that CFS presents with low blood pressure, low blood volume and perfusion defects, he surmised CFS patients were in heart failure To test this he came up with Q scores.

"Q" stands for cardiac output in litres per minute and this can be measured using a totally non-invasive method called Impedence Cardiography. This allows one to accurately measure cardiac output by measuring the electrical impedence across the chest wall. The greater the blood flow the less the impedance. This can be adjusted according to chest and body size to produce a reliable measurement (this is done using a standard algorithm). It is important to do this test when supine and again in the upright position. This is because cardiac output in healthy people will vary from 7 litres per min when lying down to 5 litres per min when standing. In healthy people this drop is not enough to affect function. But in CFS sufferers the drop may be from 5 litres lying down to 3.5 litres standing up. At this level the sufferer has a cardiac output which causes borderline organ failure.

This explains why CFS patients feel much better lying down. They have acceptable cardiac output lying down, but standing up they are in borderline heart and organ failure.

 

The Perfect Test for Chronic Fatigue Syndrome
          The central problem of chronic fatigue syndrome is mitochondrial failure resulting in poor production of ATP. ATP is the currency of energy in the body and if the production of this is impaired then all cellular processes will go slow. It is not good enough to measure absolute levels of ATP in cells since this will simply reflect how well rested the sufferer is. The perfect test is to measure the rate at which ATP is recycled in cells and this test has now been developed by John McLaren Howard at Biolab in
London.

Not only does this test measure the rate at which ATP is made, it also looks at where the problem lies. Production of ATP is highly dependant on magnesium status and the first part of the test studies this aspect.

The second aspect of the test measures the efficiency with which ATP is made from ADP. If this is abnormal then this could be as a result of magnesium deficiency, of low levels of Co-enzyme Q10 or of L-carnitine.

The third possibility is that the protein which transports ATP and ADP across mitochondrial membrane is impaired and this is also measured.

          This test is that we now have an objective test of chronic fatigue syndrome which clearly shows this illness has a physical basis. This test clearly shows that cognitive behaviour therapy, graded exercise and anti-depressants are irrelevant in addressing the root cause of this illness.

 

(Based on work of Paul Cheney, MD, PhD, one of the doctors who recognized an outbreak of CFS (also known as Myalgic Encephalomyelitis) in Incline Village at Lake Tahoe in 1984 & Stephen Sinatra, M.D., The Sinatra Solution: Metabolic Cardiology)

Effect of Exercise on non-CFS fatigue

From Tom Kindlon

A Randomized Controlled Trial of the Effect of Aerobic Exercise Training on Feelings of Energy and Fatigue in Sedentary Young Adults with Persistent Fatigue

[I thought the following was interesting because it showed the dramatic effect low-intensity exercise could have on fatigue levels in people who don't have CFS (they were specificially excluded). This would show again how important it is to have "pure" samples for exercise research and the like (e.g. CBT based on increasing activity/exercise) in the ME/CFS area. There are probably many people satisfying the Oxford definition and so-called "empirical" definition (Reeves, 2005) who do not have classic ME/CFS symptoms, who might be similar to the subjects in the study below. Indeed the CDC '94 definition itself doesn't have an requirement for any post-exertional symptoms. Depending on how the data was analysed, this could have a big effect when looking at the effect of exercise in CFS patients. Tom K]

http://www.uga.edu/coenews/features/0802oconnor.html

Low-Intensity Exercise Reduces Fatigue Symptoms by 65 Percent, Study Finds

Sedentary people who complain of fatigue can increase their energy levels and decrease their fatigue by engaging in regular, exercise, according to a new University of Georgia study.

Sedentary people who regularly complain of fatigue can increase their energy levels by 20 percent and decrease their fatigue by 65 percent by engaging in regular, low intensity exercise, according to a new University of Georgia study. "Too often we believe that a quick workout will leave us worn out - especially when we are already feeling fatigued," said researcher Tim Puetz, who recently completed his doctorate at UGA and is the lead author of the study. "However, we have shown that regular exercise can actually go a long way in increasing feelings of energy - particularly in sedentary individuals."

Puetz co-authored the study with professor Patrick O'Connor, co-director of the UGA Exercise Psychology Laboratory, and former UGA student Sara Flowers. The team's results appear in the February issue of the journal Psychotherapy and Psychosomatics. O'Connor said previous studies - including one that he and Puetz co-authored in 2006 - have shown that exercise can significantly improve energy levels and decrease fatigue. Those studies, however, primarily looked at patients with medical conditions such as cancer, heart disease and mental health problems. In this latest study, the researchers used volunteers who had fatigue that was persistent yet didn't meet the criteria for a medical condition such as chronic fatigue syndrome. O'Connor said about 25 percent of the general population experience such fatigue. "A lot of people are overworked and not sleeping enough," O'Connor said. "Exercise is a way for people to feel more energetic. There's a scientific basis for it, and there are advantages to it compared to things like caffeine and energy drinks."

The researchers recruited 36 volunteers who did not exercise regularly and had reported persistent fatigue based on a commonly used health survey. The volunteers were divided into three groups: The first engaged in moderate-intensity aerobic exercise three times a week for six weeks; the second engaged in low-intensity aerobic exercise for the same time period; the control group did not exercise. The low- and moderate-intensity groups had a 20 percent increase in energy levels over the control group. Surprisingly, the low-intensity group had a greater reduction in fatigue levels than the moderate-intensity group, 65 percent compared to 49 percent, respectively. "It could be that moderate-intensity exercise is too much for people who are already fatigued," O'Connor said, "and that might contribute to them not getting as great an improvement as they would had they done the low-intensity exercise."

He adds that energy and fatigue aren't exactly opposites of each other. A student who stays up late to finish a term paper may feel fatigued, for example, but may also feel energized as she nears the end of the paper.

The volunteers in the study used exercise bikes that allowed the researchers to control their level of exertion so that low-intensity exercise was defined as 40 percent of their peak oxygen consumption and moderate-intensity exercise was defined as 75 percent of peak oxygen consumption. For comparison, O'Connor said a leisurely, easy walk is low-intensity exercise, while a fast-paced walk with hills is moderate-intensity exercise. The team's analysis also found that the improvements in energy and fatigue were not related to increases in aerobic fitness that the exercisers experienced. Puetz said the finding suggests that exercise acts directly on the central nervous system to increase energy and reduce fatigue. "Exercise traditionally has been associated with physical health, but we are quickly learning that exercise has a more holistic effect on the human body and includes effects on psychological health," Puetz said. "What this means is that in every workout a single step is not just a step closer to a healthier body, but also to a healthier mind."

----- 1: Psychother Psychosom. 2008 Feb 14;77(3):167-174 A Randomized Controlled Trial of the Effect of Aerobic Exercise Training on Feelings of Energy and Fatigue in Sedentary Young Adults with Persistent Fatigue. Puetz TW, Flowers SS, O'Connor PJ. Department of Kinesiology, University of Georgia, Athens, Ga., USA.

Background: There is growing evidence that chronic exercise is a promising intervention for combating feelings of low energy and fatigue. Although groups with well-defined medical conditions (for example cancer and heart disease) or unexplained fatigue syndromes consistently have reported improved feelings of energy and fatigue after chronic exercise, relatively few exercise training studies have been conducted with people who report persistent fatigue yet neither have a medical condition nor reach diagnostic criteria for an unexplained fatigue syndrome. The purpose of this investigation was to use a randomized controlled design to examine the effects of 6 weeks of chronic exercise training on feelings of energy and fatigue in sedentary, healthy young adults reporting persistent fatigue.

Methods: Thirty-six healthy, young adults who reported persistent feelings of fatigue were randomly assigned to a moderate-intensity exercise, low-intensity exercise or no treatment control group. Participants in each condition then visited the exercise laboratory on 18 occasions over a 6-week period. Exercise laboratory visits occurred 3 days per week. Vigor and fatigue mood state scores were obtained at the beginning of the third exercise session each week for 6 weeks. Aerobic fitness was measured before and after intervention.

Results: The effect of 6 weeks of exercise training on feelings of fatigue was dependent on exercise intensity; however, the effect on feelings of energy was similar for both the low- and moderate-intensity conditions. The changes in feelings of energy and fatigue were independent of changes in aerobic fitness.

Conclusions: Six weeks of low and moderate exercise training performed by sedentary adults without a well-defined medical condition or an unexplained fatigue syndrome but reporting persistent feelings of fatigue resulted in similarly beneficial effects on feelings of energy. The effects for symptoms of fatigue were moderated by exercise intensity, and the more favorable outcome was realized with low-intensity exercise. Changes in feelings of energy and fatigue following exercise training were unrelated to changes in aerobic fitness. Copyright (c) 2008 S. Karger AG, Basel. PMID: 18277063 [PubMed - as supplied by publisher]

Incidentally, Patrick O'Connor was involved in studies which had results which "suggest that a daily "activity limit" may exist in this population" Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome http://www.dynamic-med.com/content/4/1/3  (a related study is: "Time course of exercise induced alterations in daily activity in chronic fatigue syndrome" http://www.dynamic-med.com/content/4/1/10  

* * *

The fastest, easiest and cheapest way to diagnose CFS is to send the patient out to exercise. A depressive will return energized, a CFS patient will return on the verge of collapse. Yet, too many doctors still don’t know this, and think that CFS=depression and therefore can be cured with anti-depressants and exercise ... two things that will make a real CFS patient worse.

The pollution of the patient pool in research with people who really do have depression or other illnesses rather than CFS needs to stop so that we can get valid studies to help our people, rather than recommendations to do things that could leave them permanently disabled. Too many of our brothers and sisters in the British Commonwealth became bedridden after enforced exercise programs. Fortunately, that nonsense isn’t a requirement of getting disability benefits in the US. Unfortunately, the US disability system does nothing at all to help patients get better ... in fact, you need to wait 2 years after qualifying for SSDI before you qualify for government medical care. Doing without medical care for that long almost guarantees you’re going to get worse, not better; but on the pittance you get from SSDI, you can’t afford to pay for your own medical bills.

If we activists accomplish nothing else, we need to publicize the notion of a Daily Activity Limit to those people (doctors included) who can’t fathom "if you can do X, why can’t you also do Y?" One doctor extrapolated from the fact that I could remain upright for 5 minutes in his office without passing out that I could remain upright for 8 hours at a job, despite my telling him that after an hour or less sitting/standing, I got very dizzy and had to lie down so that I would not faint.

Other people extrapolate that if I can type a few e-mails a day or make my way to the doctor once a month, that proves that I can work 40 hours a week. In fact, each time I leave the house, I have to rest for a day or two (sometimes three), which means that I do fit the definition of being disabled by virtue of not being able to maintain adequate attendance at a job. As described in a recent article in this blog, a person is not employable if they can go to work on Monday and that sends them to bed the rest of the week. (In fact, according to Redding v. Chater, even the ability to work 4 days a week, but needing to take 1 day off each week to rest, qualifies a person for SSDI. The VocRehab experts will say that makes you unemployable, but the judges don’t believe it.)

Friday, March 7, 2008

In Dr. Hyde's Own Words

In Hyde's own words:

The (first) 1988 CDC definition did several things, all of which caused immeasurable confusion.

Why did the 1988 CDC definition damage our knowledge and understanding of
this epidemic and endemic disease?

Remember in describing the Lake Tahoe epidemic this committee were describing a typical Myalgic Encephalomyelitis (ME) Epidemic.

Major Problems of the 1988 CDC definition

It is my opinion that the CDC 1988 definition of CFS describes a non-existing
chimera based upon inexperienced individuals who lack any historical knowledge of this disease process
. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance. Let us try to decipher this definition.

1. The principal author: Dr Gary Holmes is one of those men who it is
difficult not to like. From my limited knowledge of Dr Holmes it is my
opinion that he is well organized, brilliant, a kind man and the sort of
person any university would want to have on staff. To my knowledge he never
continued to show any interest in this disease process and Pub Med and
Google searches fail to reveal any subsequent scientific papers concerning
M.E. or CFS.

2. The other authors: So curious was the 1988 CDC definition that if you
review the authors, you will find that the majority had never published on
M.E. or CFS either before or after this definitional publication and the majority had never ever to my knowledge ever before or since examined or investigated any serious number of CFS patients.
In fact, I would estimate that the majority had never actually examined and investigated a single M.E. patient.

3. The curious name: The authors named the disease Chronic Fatigue
Syndrome: Fatigue is a totally undefinable concept. Fatigue is impossible
to measure or quantify. Fatigue is so non-specific that it can be a common
element in any acute or chronic disease and many psychiatric diseases.
Worse, it redirects the medical and public attention to the totally
undefinable fatigue and away from the obvious Central Nervous System changes in these patients. Much worse, it makes fun of a serious illness
since most people and most physicians tend to equate fatigue with
laziness, work avoidance, something that a bit of effort will chase away. It
has turned out to be a damning indictment to all M.E. patients.

4. The first Major Criteria: This 1988 CDC definition contains (a) two
major criteria, (b) 11 Minor Criteria, (c) three physical criteria.

Let us start with the first major criteria:

"A new onset of persistent or relapsing, debilitating fatigue or easy
fatigability in a person who has no previous history of similar
symptoms, that does not resolve with bed rest, and is severe enough to
reduce or impair average daily activity below 50% of the patients
premorbid activity level for a period of at least 6 months."
This major criterion does not clearly distinguish between acute or gradual
onset diseases. In all M.E. epidemic or endemic patients the patients
represent acute onset illnesses. The fatigue criteria listed here can be
found in hundreds of chronic illnesses and clearly defines nothing.

5. The second Major Criteria: This makes the illness CFS a disease of
exclusion. The definitional statement is:

"Exclude all other disease processes. "

Any disease process that has major criteria, of excluding all other disease
processes, is simply not a disease at all; it doesn't exist. In effect, by either
the first or second major criteria this is nor a measurable illness and a
disease that is not measurable or testable simply does not exist. What did Dr Holmes and his colleagues miss? They missed the fact that M.E. is (a) an acute onset illness, (b) the fact that M.E. is a measurable diffuse brain injury, (c) in a complete form, M.E. has a dual inception, an infectious illness followed by the diffuse neurological aspects of this disease.

6. The Minor Criteria are consistent with M.E. but unfortunately for the
greater part, are also consistent with Infectious Mononucleosis that I
believe the authors of these diagnostic criteria thought they were
describing.

7. The Three Physical Criteria of the CDC 1988 Definition: These
findings are totallyrelated to infectious mononucleosis and not to
the normal or average Myalgic Encephalomyelitis. The criteria fail
to distinguish the biphasic nature of M.E. as mentioned before, the
initial infectious illness that often resembles the minor infection that
heralds another biphasic disease, paralytical poliomyelitis. The infectious
disease process varies but is usually minor and after three or four days is
usually unverifiable so that any researcher who quotes the patient as having
the three physical criteria when he or she examines the patient probably
at the very least can be accused of being very imaginative. First it is
not possible to examine any patient in the first days of illness unless it
is an epidemic situation. In several chronic thousand patients I have
examined the three physical criteria simply do not exist in more than 1%
of the patients examined.

What are the CDC Physical Criteria?

a. Low-grade fever with an oral temperature between 37.6 and 38.6
    centigrade,
b. Non-exudative pharyngitis (without any pus or discharge),
c. Palpable or tender anterior or posterior cervical or axillary lymph nodes
    less than 2 cm in diameter.

In the chronic patients the temperature tends to be normal or subnormal.
Most chronic patients have no pharyngitis, they may have a dry pharynx,
they may have an injected pharyngeal area around the tonsilar pillars,
(Anne Mildon effect) but generally they don't have a classical pharyngitis
as seen in any acute infectious disease. As to the palpable lymph nodes, all
healthy patients well or otherwise unless they are severely obese have
palpable lymph nodes. Since many M.E. patients have hypersensitive
skin or fibromyalgia-like pains of course they have tenderness. But painful
lymph nodes scarcely are different from what is found in any acute upper
respiratory tract infection. If you are going to list physical findings then
you have to first specify whether this is in the first few days of the illness or
in the chronic phase and as mentioned almost no physician will ever see
acute onset illness unless in an epidemic. In other words these physical
criteria are at best of no diagnostic importance and in general, useless.

8. The Insurance Company - psychological bias: the direction given in
the name Chronic Fatigue Syndrome has opened the door for insurance
companies to invent and support a pseudo-psychological treatment of
physical and cognitive therapy that in my view has been used to push the
patients so far that they then quit the program and this allows the
insurance company to define the disabled patient as non-compliant and
allows the insurance company to stop insurance payments. Since many
if not most insurance policies also cut the patient off after two years
of disability, this psychological interpretation has been destructive to the
many patients disabled by M.E.

9. The pharmaceutical companies bias: These companies have also
jumped into the door opened by this name of chronic fatigue - depression
association in recommending a non stop series of "new and better"
antidepressive medications that not only have added little if anything to the
patients recovery but in many cases have caused suicides and even
greater fatigue. Since many of these medications have a side effect of
causing obesity, the patient's self worth is often further deteriorated.

http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf

You may qualify for a Stimulus Payment

DID YOU RECEIVE SOCIAL SECURITY DISABILITY BENEFITS LAST YEAR?
Even if you are not otherwise required to file a tax return, you may still be
entitled to an
economic stimulus payment from the federal government.

WHAT YOU COULD GET: You could receive a payment of $300 for individuals or
$600 if you are married and file a joint tax return with your spouse. Eligible
taxpayers who qualify for a payment
may receive an additional $300 for each qualifying child. To qualify a child
must be under age 17 as of December 31, 2007.

WHAT YOU NEED TO DO: All you have to do to get the stimulus payment is file a
2007 IRS Form 1040 or Form 1040A and report at least $3,000 in qualifying
income on the form. You can include
the amount of your SSA benefits to qualify for the stimulus payment.

QUALIFYING INCOME: Add the amount of your Social Security benefits to other
qualifying income, such as wage earnings or certain benefits paid by the
Department of Veterans Affairs, to
reach the $3,000 requirement. However, Supplemental Security Income (SSI) does
not count as qualifying income for the stimulus payment.

WHAT YOU FILL OUT: You will enter your name, address, Social Security Number,
and filing status on the form. Then just enter the amount of benefits reported
to you in January on Form
1099-SSA on Line 14a of Form 1040A or Line 20a of Form 1040. If you don't have
Form 1099-SSA, you can estimate your Social Security benefits by taking the
monthly amount you received last year and multiplying it by the number of
months you received a check. If you need to include wage earnings to reach the
$3,000 qualifying level, enter that amount on Line 7 of Form 1040A or 1040. In
addition, you should write the words "Stimulus Payment" at the top of the
1040A or 1040.

IS THE STIMULUS PAYMENT TAXABLE NEXT YEAR? No!

WILL THIS PAYMENT AFFECT THE AMOUNT OF SSA BENEFITS YOU RECEIVE? No!

WHEN WILL I RECEIVE MY PAYMENT? The IRS will begin mailing checks in early
May.

FOR MORE INFORMATION: In late March 2008, the IRS will mail a packet of
information to
recipients of Social Security benefits who did not file a tax return last
year. The packet will contain guidance to help you claim the stimulus payment.
If you need information in the interim, you can

visit the IRS web site at www.IRS.gov.

Fibromyaglia bill in Missouri Legislature

Source: The Kansas City Star

Julius Karash jkarash@kcstar.com

URL: http://www.kansascity.com/382/story/507970.html  

Bill designed to help fibromyalgia sufferers

Legislation to help fibromyalgia patients has been introduced in the Missouri General Assembly. House Bill 2243, sponsored by Rep. Shalonn 'KiKi' Curls of Kansas City, would require the Missouri Department of Health and Senior Services to create a Missouri Fibromyalgia Panel.

The panel would raise at least $50,000 to establish an information and outreach campaign that would focus on issues such as early diagnosis and treatment, prevention of complications and improving quality of life. The panel also would work with other state and local agencies to promote fibromyalgia training and education programs for physicians and other health professionals.

The bill includes provisions to allow health providers in certain cases to override restrictions imposed on drugs by pharmacy benefit managers.

Fibromyalgia is a chronic condition characterized by fatigue and widespread pain. The condition is more common among women than men. Curls' mother has suffered fibromyalgia for several years.

(c) 2008 The Kansas City Star

* * *

A group led by National Fibromyalgia Association is meeting at the California State Capitol this Monday.  Governor's Press Room 1190 at 9 AM for the press conference.  Wear a white shirt so they can see our united numbers.

With luck, we can also get our Lege to take fibromyalgia seriously.

Wednesday, March 5, 2008

Viruses and Weight Gain

Remedy magazine, Spring 2008

"The Amazing Life of a Fat Cell"

In 2007, Magdalena Pasarica, M.D., Ph.D., principal researcher at the Pennington Biomedical research Center in Baton Rouge LA, presented a paper at the International Applied Fat Technology Society meeting about her research on the human adenovirus 36 (AD-36) and its effect on the various fat cells found in fatty tissue. Adenoviruses, the common viruses that cause colds and flu ... "But when we infected chickens, rats, marmosets and mice with AD-36," says Dr. Pasarica, "after three to six months, they all became obese, even though they consumed similar amounts of food as the control group did."

Dr. Pasarica’s group then studied the effect of AD-36 in animal preadipocyte cell lines and found that the virus caused theses cells to accumulate fat. ... [In human research] "they were testing for people who had been infected with the virus at one point. What they found was that the people who were antibody positive were significantly heavier than the ones that were antibody negative." [In testing with adult stem cells] Dr Pasarica’s team performed a petri dish experiment that showed once the stem cells ... were infected with the virus, they became fat cells.

"The virus tells them to become fat cells," she says.

"We’ve shown that AD-36 could act in three ways to make people become fatter and fatter," conjectures Dr. Pasarica. "The virus makes existing fat cells bigger and fatter. It makes pre-fat cells turn into fat cells that in turn get fatter and fatter. And it influences stem cells in adipose tissue to turn into fat cells. It appears this is how we get more fat cells and fatter fat cells."

"We are not claiming that all obesity is caused by this infection," she stresses, "but we do believe that a certain percent might be caused by it."

* * *

Ken Fujioka, M.D. of the respected Scripps Clinic in San Diego says "For a long time, we've known that viruses can get into your DNA and reprogram your body." Therefore, it’s not in the least "weird" (if you’re talking to a virologist) that a virus can cause the various problems evidenced in CFS ... including newly-developed weight problems in people who were previously of normal weight.

I have found, over 21 years with the illness, that when I go into relapse, my weight goes up, and when I go into remission, the extra weight comes off. Prior to getting the virus, my weight had been stable at 125 for almost 10 years, which was less than the lowest-acceptable weight for someone of my height, and had been 117 for almost 10 years before that. Clearly, I did not have a weight problem, or even a tendency toward weight gain, until I got the virus; the virus changed something about my body, for the worse.

I can tell you, from two decades of experimentation, that when I’m in relapse, it’s virtually impossible to lose weight. Even at 800 calories a day (1000 is considered a "starvation diet"), the pounds stubbornly stay put. My doctor’s advice was that it was more important to eat well – lots of protein – than to worry about my weight.

The only time I’ve lost weight while in relapse was a period of several months where almost nothing stayed down; one month, all I could keep down was instant potatoes: no salt, no butter, no milk, no gravy, just potato flakes and water. As soon as my doctor figured out why I couldn’t keep food down, my weight went right back up where it had been, despite the fact that I was able to be more physically active than when I was essentially bedridden. (No, I was not over-eating; I was still at a reasonable 1200 calories a day or less.) I don’t recommend constant nausea as a weight loss program, though.

This, too, shall pass. Eventually, I’ll go into remission and the weight will come off. Until then, I am following doctor’s orders to eat a protein-rich diet of 1200-1500 calories a day, hoping to build up my immune system enough to get back into remission.

Meanwhile, don’t let anyone make you feel guilty that the CFS virus has made you gain weight. Altered metabolism is a known symptom.  Eating well is better for you than drastic dieting.

Deliberate Deceit or Inexcusable Ignorance? by Margaret Williams

The UK Government's response of 27th February 2008 to a petition containing 8,481 signatures asking that myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) be accepted in the UK in the same category as in the World Health Organisation's International Classification of Diseases was predictable.

That petition asked: "We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome" and it noted that official Guidelines are still directing the Health Service to treat ME sufferers by means of cognitive behavioural therapy (CBT) and graded exercise therapy (GET), these being tools used to treat mental illnesses.

The petition asked for money to be invested in research into the physiological aetiology of ME/CFS and noted that: "Patients should not be forced into becoming psychiatric cases or lose their benefits" (see http://petitions.pm.gov.uk/ME-is-real/  ).

The Government's response was tortuous: "The World Health Organisation classifies CFS/ME as a neurological illness, but we recognise that many others working in the field of CFS/ME believe that until further research identifies its aetiology and pathogenesis, there is a risk of restricting research into the causes, mechanisms and future treatments for CFS/ME.

There is currently very little information about the relative benefits of CBT and graded exercise treatment and a scientific trial is the only way to find out which is the most effective approach. The aim behind CBT is to support a sustainable improvement in functioning and adaptation to illness (and) CBT can help the patient to feel more in control of their illness. In common with other illnesses such as cancer where it has been successfully used, its use does not imply that the cause of (CFS/ME) is psychological" (see http://www.pm.gov.uk:80/output/Page14656.asp  ).

On 4th March 2008, Amanda O'Donovan, Lead Clinical Psychologist at St Bartholomew's Hospital, London (whose CFS Unit is heavily involved with the psychosocial model of "CFS/ME") posted a message of support for the Government's response on a UK ME/CFS internet group (http://health.groups.yahoo.com/group/IMEGA-e/message/24450  ), stating: "The use of CBT in cancer is not used to justify its application in CFS/ME, nor does (the Government's response) imply that. CBT is recommended for management of CFS/ME as the evidence base shows it (and GET bien sur) to be the most effective interventions. The list of physical conditions where CBT is recommended is much longer than CFS/ME and cancer and includes cardiac rehabilitation and chronic pain as well as diabetes, stroke, cystic fibrosis (and) HIV. I hope this clarifies".

This would seem to be a most disingenuous response as it implies (i) that CBT has been shown to be efficacious in "CFS/ME" and (ii) that CBT is used as a primary intervention in other organic disorders to help sufferers deal with serious illness (so "CFS/ME" sufferers should not reject it), when neither of these implications is true.

In relation to the first point, the reality is that the so-called "evidence-base" for the efficacy of CBT that NICE (National Institute for Health and Clinical Excellence) relied upon in its Guideline of 22nd August 2007 for the management of "CFS/ME" simply does not exist.

This is because NICE chose to rely on the "evidence" produced by psychiatrists of the Wessely School, whose data was flawed because they deliberately included patients in their studies who, by the psychiatrists' own case definition, could not be suffering from ME, yet they claim their studies refer to "CFS/ME".

Furthermore, it has been clearly demonstrated that in the Systematic Review of the literature on CBT/GET which formed a major part of the "evidence-base" used in the NICE Guideline on "CFS/ME", information was skewed and even deleted in order to cast CBT/GET in a more favourable light than the evidence permitted, a matter which may constitute research misconduct (for a detailed exposition of the evidence, see http://www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html  ) It will be recalled that even the team from the Centre for Reviews and Dissemination at York who carried out the Systematic Review specifically to support the NICE Guideline found that after a course of CBT, there is no objective evidence of improvement and that any transient gains may be illusory (Whiting P, Bagnall A-M et al; JAMA 2001:286:1360-1368).

In relation to the second point, the NICE Guideline on "CFS/ME" itself does not interpret CBT or GET as adjunctive support in dealing with a devastating disorder, and neither does the Chief Medical Officer's Working Group Report of January 2002.

The CMO's Working Group Report defines CBT as: "a tool for constructively modifying attitude and behaviour" (Annex 6: 11:8). The NICE Guideline recommends the use of CBT to correct "unhelpful beliefs"; it states that CBT should be used to address "the relationship between thoughts, feelings, behaviours and symptoms" and it refers to "the distinction between causal and perpetuating factors". It specifically states that the CBT plan will include "identifying perpetuating factors that may maintain CFS/ME symptoms" and that the CBT plan will address "any over-vigilance to symptoms". This is wholly unacceptable: it demeans people with ME/CFS and it ignores the substantial body of evidence that ME/CFS is not a psychosocial disorder.

Referring to GET, the NICE Guideline specifically states that the intensity of GET should be incrementally increased, leading to aerobic exercise. This is in direct contradiction to international experts such as Professor Paul Cheney from the US, who advise that aerobic exercise should not be used in patients with ME/CFS who may be in a form of heart failure. It would thus seem to be improper for anyone to suggest that in "CFS/ME", CBT/GET is merely providing adjunctive support for people who have to deal with serious organic disease.

As shown in the Spring 2008 edition of "Breakthrough" produced by the research charity ME Research UK (MERUK), it is only in the case of "CFS/ME" that a NICE Guideline recommends CBT as the primary management approach, and contrary to the implications of Ms O'Donovan's statement, CBT is not promoted by NICE or anyone else as the main intervention in cancer, chronic heart failure, Parkinson's Disease, multiple sclerosis, chronic pulmonary disease, diabetes, hypertension or indeed in any other physical disorder.

Since NICE was founded in 1999, well over one third of its appraisals (42) have been challenged and gone to appeal, and nearly half of these appeals have been upheld. On 10th January 2008 the UK House of Commons Health Select Committee called for a major review in the way that the Government-appointed NICE makes its recommendations. The Committee's decision is not surprising, given the current levels of public, patient and industry dissatisfaction with the Institute's performance (see: The Patient as Activist: HSCNews International, issue 11, February 2008; http://www.patient-view.com  ).

A significant amount of evidence showing that CBT is not effective (either in ME/CFS or in other organic disorders) was submitted to NICE during the consultation period. NICE, however, chose to disregard this evidence, just as it disregarded all the evidence that was unsupportive of its seemingly pre-determined policy (i.e. ensuring that the only regime to be recommended for the management of "CFS/ME" would be CBT/GET).

In particular, evidence from world-renowned psychiatrists such as Per Dalen, a Professor of Psychiatry from Sweden, and from Australian psychiatrist Neil McLaren was disregarded (for their evidence, see "Myalgic Encephalomyelitis: a review with emphasis on key findings in biomedical research". M Hooper. J Clin Pathol 2007:60:466-471). To date, there has been no explanation from NICE as to why, for example, it disregarded the evidence contained in "Clinical Psychology Forum 162", June 2006 (i.e. over a year before the publication of its Guideline), in which internationally renowned psychologists exposed the reality that psychological therapies do not actually work and may in fact harm patients who submit to them.

For the avoidance of doubt, the following are quotations from that issue (all are fully referenced in the document itself):

"Reflections on the practice of clinical psychology" by Bob Diamond (pp 3-8)

"Clinical psychology is part of mental health services that, on occasions, contribute more to people's distress than provide possible benefits. There are plenty of testaments to suggest that the iatrogenic effect of mental health services contribute to the ongoing damage to people's lives. There's plenty of evidence showing positive outcomes to psychotherapy to be much more modest than our profession has so far acknowledged. We should ensure that our work is based in reality and not premised on prevailing popular, even fashionable, concepts. Whilst specific psychological approaches may continue to offer some help to some people, some of the time, such claims should be more modestly made".

"Fundamental questions for psychology" by John Cromby (pp 9-11)

"This paper argues that the mainstream of psychology is misconceived in ways which make it largely unsuitable as a basis for clinical interventions".

"Implications for practice" by David Smail (pp 17-20)

"Evidence for the effectiveness of psychological therapies is far weaker than can be considered acceptable. Largely to avoid these difficulties, clinical psychology has tended to opt for dogma rather than truth. Perhaps the greatest danger facing us is that we become reduced to production-line workers who deliver packages of treatment in accordance with centrally authorised notions of what constitutes an 'evidence-base'. This certainly is the direction advocated by Richard Layard and endorsed by prominent members of the profession".

"Lost for Words" by Paul Kelly and Paul Maloney (pp 21-24)

"Narrative therapy emerged from its parent discipline of family therapy (and) its theoretical base draws upon social constructionism. It has become clear that social constructionist philosophy may have serious practical implications".

"That was then, this is now" by Penny Priest (pp 25-28)

"The gulf between fiction and reality – perhaps we cling to the illusion of control because it's unbearable to think about the possibility that sometimes we are not much more powerful than the people we are trying to help. It's easy to get caught up in playing this game of changing people. We might feel disingenuous pretending that our work is a scientific exercise, calling an intervention 'CBT', as if this is some quantifiable thing and then calling the outcome successful or not successful on the basis of scores on a questionnaire".

"The trouble with psychotherapy" by Paul Maloney (pp 29-33)

"The supposedly sound evidence base for the effectiveness of the psychological therapies may be far more questionable than is widely supposed. The term 'psychotherapy' refers to a broad family of talking treatments which are of proven effectiveness. The assumptions contained within this sentence constitute the taken-for-granted world of the profession (and) are endorsed in central government recommendations for the use of psychological therapies in the NHS, and most recently in calls by Richard Layard (for CBT to be the) main answer to the personal and social malaise which seems to be afflicting us at record levels. In contrast, the enduring reality is that the psychotherapy outcome literature offers precious little support for any of the above notions. This is an observation that seems to have been consistently ignored. A large number of investigations (assessing the effectiveness of psychological therapies) have been conducted, and although the results of these studies have been extremely variable, so-called meta-analyses suggest that most forms of psychological therapy are at least mildly helpful (and) undergoing psychological therapy is claimed to reliably lead to significant improvement in the mental health of up to a quarter or above of all recipients. Not surprisingly, these claims seem to be authored by the core psychotherapy professions. Yet there are a number of serious methodological problems associated with attempts to assess the effectiveness of psychotherapy in this way, so much so that some academics and practitioners admit that it is hard to decide whether studies do or do not support the notion that psychotherapy is generally helpful.

"To begin with, the field has long suffered from a bias towards selective reporting and publication of those studies that show only the desired positive results. Many trials have included inadequate control groups (and) a large proportion of studies have also suffered from systematic participant attrition or selection effects that make the result hard to interpret. Statistically significant differences in outcome have often concealed large numbers of people for whom psychotherapy has been ineffective. Aside from these far from minor difficulties, this literature may suffer from an even more pervasive problem. This is the tendency to rely almost exclusively upon the reports of participants in the absence of any fully independent check upon the treated person's progress in the world outside the consulting room.

"Rather than getting to grips with these findings, the clear possibility remains that most of the claimed benefits of psychotherapy might reside in the placebo effects. This last prospect is strongly underscored by four further lines of evidence (these are set out in the article). A reliable trend within the psychotherapy outcome literature is that the closer the study comes to real life settings, the less significant the outcomes tend to be. The recent American multi-centre research trial involved the analysis of 42,000 clients over a span of five years. The results were disappointing in that there was no evidence that psychological therapy led to improvement in the lives of these recipients. As Tana Dineen (1999) observes: ' These results should raise serious doubts about some current clinical beliefs about the effectiveness of psychological services…….there is scant evidence of its effectiveness in real life settings'. None of (this evidence) seems to be very encouraging for the official view of psychological therapy as a well-validated body of effective clinical treatments, (yet) the tendency inside the therapeutic professions seems to have been to ignore or downplay these considerations. Personal conviction is doubtless one of the reasons. Another element may be the reliance upon meta-analytic studies, a trend that is reinforced by the accumulating NICE guidelines on psychotherapeutic practice in the NHS. Although officially presented as both definitive and authoritative, such methods are notoriously prone to generating misleading or inconclusive data".

Given that this is actual confirmation that CBT is ineffective and that this evidence was in the public domain for over a year before the production of its Guideline on "CFS/ME", why would NICE have ignored this relevant evidence that was available to its Guideline Development Group?

Although it post-dates the publication of the NICE Guideline on "CFS/ME", there is further criticism of the NICE policy of recommending CBT. On 10th January 2008 Malcolm Learmonth, a senior art psychotherapist with Devon Partnership NHS Trust, wrote an article called "The wrong advice" (see http://www.psychminded.co.uk/news/news2008/jan08/wrongadvice001.htm  ). It was also published in Openmind magazine. He said the following:

"Both (the Layard report) and the NICE guideline on depression are shaping policy and having a major impact on what help is available to people. And both claim that CBT is the 'evidence-based' psychological treatment. The full NICE guideline runs to 358 pages, but it is also available in three shortened versions. Unsurprisingly, few people – including those who implement the guideline – read the full version. Yet it is only in the full version that the flaws show themselves. The shortened versions simply remove all the doubts. What is presented to the world as 'Now we know all the facts we can tell you what's good for you' turns out to be highly questionable. Let's start with user participation. The guideline claims that 'For any guideline to be credible it has to be informed at every stage of its development by the perspective of patients' (p31). Yet the service user perspective takes up less than one page out of 358. This is mere lip service: there is no evidence of service user participation having taken place beyond this statement. The apparent logic and coherence of the guideline's approach breaks down under scrutiny.

"Then there is the question of what constitutes 'evidence'. Grade A evidence is obtained from random controlled trials (RCTs). Grade B evidence is (from) well-designed controlled studies without randomisation. Grade C evidence is expert opinion. It is extraordinary to claim that the guideline is based on the clinical experience of healthcare professionals, when only the professional group define who they regard as expert authorities and what constitutes evidence. As we have seen, evidence that is service user based doesn't count, making a nonsense of claims that these perspectives are central.

"And then there are the vested interests of those who manufacture the evidence (and who), as the guideline acknowledges, may produce unreliable evidence. The writers of the guideline know that this evidence is distorted, and say so. And yet it is still presented as Grade A evidence. Even this evidence for CBT is a lot weaker than the abbreviated guideline would have us believe. Read the shortened guideline and you could believe that antidepressants and CBT are 'facts' of what 'works'. Read the full version or try talking with a few people and you get a different picture. "I conclude that the guideline is a logically flawed mouthpiece for the professional and commercial vested interests that have created it. We must challenge NICE's approach to mental health, root and branch".

On 29th February 2008 Learmonth followed this up with a letter published in The Guardian, which was unequivocal: "Only in the small print of the National Institute for Health and Clinical Excellence guidelines that are pushing CBT as the psychological therapy do we find statements like 'the clinical evidence review showed no overall superiority for CBT alone on treatment outcomes over antidepressants' ".

There is also the recent Dutch report of February 2008 by Drs MP Koolhaas, H de Boorder and Professor Elke van Hoof (see http://www.immunesupport.com/library/showarticle.cfm/ID/8724  ) which comes to unambiguous conclusions about CBT:

"In recent years, Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (ME/CFS), has been getting a lot of attention in scientific literature. There is as yet no consensus about the treatment of ME/CFS. The different treatments can be subdivided into two groups, the pharmacological and the psychosocial therapies.

"Most of the scientific articles on treatment emphasize the psychosocial approach. The most intensively studied psychological therapeutic intervention for ME/CFS is cognitive behaviour therapy (CBT). In recent years several publications on this subject have been published. These studies report that this intervention can lead to significant improvements in 30% to 70% of patients, though rarely include details of adverse effects.

"This pilot study was undertaken to find out whether patients' experiences with this therapy confirm the stated percentages. Furthermore, we examined whether this therapy does influence the employment rates, and could possibly increase the number of patients receiving educational training, engaged in sports, maintaining social contacts and doing household tasks.

"Method: By means of a questionnaire posted at various newsgroups on the Internet, the reported subjective experiences of 100 respondents who underwent this therapy were collected. These experiences were subsequently analysed.

"Results:

1) Only 2% of respondents reported that they considered themselves to be completely cured upon finishing the therapy

2) 30% reported 'an improvement' as a result of the therapy

3) The same percentage [30%] reported no change

4) 38% said the therapy had affected them adversely, the majority of them even reporting substantial deterioration

5) Participating in CBT proved to have little impact on the number of hours people were capable of maintaining social contacts or doing household tasks

6) A striking outcome is that the number of those respondents who were in paid employment or who were studying while taking part in CBT was adversely affected. The negative outcome in paid employment was statistically significant.

"A subgroup analysis showed that:

1) Those patients who were involved in legal proceedings in order to obtain disability benefit while participating in CBT did not score worse than those who were not.

2) Cases where a stated objective of the therapy was a complete cure did not have a better outcome.

3) Moreover, the length of the therapy did not affect the results.

"Conclusions: This pilot study, based on subjective experiences of ME/CFS sufferers, does not confirm the high success rates regularly claimed by research into the effectiveness of CBT for ME/CFS.

"Overall, CBT for ME/CFS does not improve patients' well-being: More patients report deterioration of their condition rather than improvement. "Our conclusion is that the claims in scientific publications about the effectiveness of this therapy, based on trials in strictly controlled settings within universities, has been overstated and are therefore misleading".

(Source: Medisch Contact, February 2008, ISBN: 978-90-812658-1-2, by Koolhaas MP, de Boorder H, van Hoof E. The Netherlands. Information from m.p.koolhaas@consunet.nl  ).

The evidence of the lack of efficacy of CBT continues to mount up, but who – apart from the ME/CFS community – is paying attention or cares about this travesty?

Could it be that both NICE and Amanda O'Donovan (not forgetting the UK Government and the Wessely School psychiatrists who act as its advisers on "CFS/ME", the NHS, the Department of Health, the Department for Work and Pensions and the Medical Research Council) prefer their personal conviction to actual evidence?

Fibromyalgia is not a Rheumatological Disease

Thanks to Jacqui for finding this one!

Fibromyalgia Is Not a Rheumatologic Disease Anymore

http://www.medscape.com/viewarticle/570225?src=mp

Think of your last patient with difficult-to-treat fibromyalgia: Aren't they all? Did you refer that person to a rheumatologist?

Since the 1950s, when it was first described by Dr. Graham, "fibrositis" or fibromyalgia was thought to be a rheumatologic disorder because it was characterized by musculoskeletal pain similar to other rheumatologic diseases.[1]

In 1990, The American College of Rheumatology established diagnostic criteria based on the scoring of 18 potential tender points.[2] It turns out, however, that these tender points have nothing to do with fibromyalgia. Biopsy of the tender points shows no pathologic changes, and numerous studies have not shown any abnormalities in the musculoskeletal tissues that are painful.

Current evidence points to a neurologic disorder of central pain processing.[3] Fibromyalgia patients experience pain differently and have lower pain thresholds compared to normals. Research has demonstrated that various pain-related processes in the brain and spinal cord are abnormal in fibromyalgia.[4] But more work remains to be done.

Market surveys show the number one class of drugs used to treat fibromyalgia is nonsteroidal anti-inflammatory drugs.[5] Since fibromyalgia is not an inflammatory disease, it is not surprising we have a lot of treatment failures.

The pharmaceutical industry knows this, and they are viewing fibromyalgia as the prototypical central pain state. The 2 main drug classes of interest are the dual receptor reuptake inhibitors, like duloxetine or Cymbalta, and the antiepileptic drugs, like pregabalin or Lyrica. In fact, pregabalin has shown enough efficacy, that it is the first and only drug approved by the FDA for the treatment of fibromyalgia.[6]

Therefore, in the future, with new insights and therapies on the horizon, we will no longer need to refer our fibromyalgia patients to the rheumatologist.

That's my opinion. I'm Dr. George Griffing, Professor of Medicine at St. Louis University and Editor-in-Chief of Internal Medicine for eMedicine.

Reader Comments on: Fibromyalgia Is Not a Rheumatologic Disease Anymore
See reader comments on this article and provide your own.

Readers are encouraged to respond to the author at griffigt@slu.edu  or to George Lundberg, MD, Editor in Chief of The Medscape Journal of Medicine, for the editor's eyes only or for possible publication as an actual Letter in the Medscape Journal via email: glundberg@medscape.net

* * *

I took enough Advil to give me an ulcer without any relief at all.  Even in prescription doses, and even at higher-than-prescription doses, it did nothing for my pain.  The doctor's response to my complaints of constant pain?  "Take Advil."  This five minutes after telling me to stop taking Advil because it was giving me an ulcer!

As much as your doctor may hate the idea, lean on him to provide a mild narcotic/opiate pain reliever, which is the only thing that works on the neurological pain of CFS/fibro.  Tramadol/Ultram is so mild that it is sold without a prescription in Canada; 50 mg of Tramadol provides me more relief than 1200 mg of Advil.

If your doctor won't provide it, tell him you want a referral to a pain management specialist.  Untreated pain can cause changes in the central nervous system within a day or two, and those changes may be permanent.

Meanwhile, try heat: hot bath, heating pad, ThermaCare wraps.

Facts vs. Interpretation

Your interpretation of what you see and hear is just that – your interpretation.

– Dr. Robert Anthony

 

And doctors are very good at "interpreting" what they see and hear, to mean what they want it to, and not what the patient is trying to convey.

If the doctor expects to see a woman who, like his own wife, got married so she could stop working, then he will interpret any married woman’s complaints as an attempt to quit working. It went completely past him that I was still working despite the difficulties, that my boss had told me that I would lose my job if I didn’t get the problem fixed, because he "knew" that my goal was to stop working. If getting rid of my job were my goal, why would I be so upset that this damn disease was threatening my job? That didn’t register. Nor did it register that I’d had symptoms months before the wedding. He had an explanation that made sense to him, and didn’t need to listen to the patient.

If the doctor expects to see a depressed divorcee, because he "knows" that all divorced women are depressed, then he’s going to re-interpret everything you say to make it fit what he expects to hear. I was told "nothing you said made sense" ... because I make a point of reporting those symptoms that differentiate CFS from depression, and he couldn’t sledgehammer what I was saying into the matrix that he wanted it to fit into. Obviously, if what the patient was saying didn’t make sense, the problem was with the patient’s ability to report symptoms accurately, and not with his diagnosis being wrong. As far as he was concerned, he was right, and all the previous specialists who’d diagnosed CFS were wrong.

To this day, he cannot get his head around it that he was trying to interpret the information to fit an erroneous pre-conceived stereotype, and that I had given him everything necessary to make the CFS diagnosis, if he had known how CFS is diagnosed. He won’t even address the ridiculousness of his assertion that my symptoms were caused by the divorce, which flies in the face of the prior medical records showing that I had the same symptoms while married, and my statement that I already had symptoms before getting married. He can’t admit to any possibility he might be the one who’s mistaken, so he has to claim that I, and the specialists, and the psychologists, and the eyewitnesses, are all wrong in our observations and only he is correct.

The onlyreason he could accept for my saying that anti-depressants didn’t help me was "you don’t want to get better and have to go back to work". It simply didn’t compute that anti-depressants don’t help because I don’t have depression; I have a virus. A virus which was diagnosed by a virologist who knew what a post-viral syndrome should look like and called me "a textbook case".

Too many patients have found that as soon as they say "tired all the time", the doctor shuts down and immediately thinks "depression", even if the rest of the symptoms don’t match up. And there are many symptoms of CFS that don’t match up to a depression diagnosis. But that’s the way the doctor chooses to interpret the symptoms, and if you include symptoms that are not commonly associated with depression, he interprets those as "patient is confused" or "patient is too stupid to know what her symptoms are" rather than "doctor is looking at wrong diagnosis".

Even when given the diagnostic criteria, some doctors choose to interpret them in their own way: some doctors believe that if you can walk, you can’t have CFS. They won’t make the CFS diagnosis unless your husband carries you into the office. Which means that those who don’t have a husband, or whose husband is not physically able to carry you, would never get a CFS diagnosis from one of those doctors. The diagnostic criteria don’t say anything about "can’t walk" or "24 hours a day in bed" – those are things that some doctors erroneously interpret into them. The diagnostic criteria call for 50% reduction in prior level of activity, which means that someone like me, who previously was active 16-18 hours a day, could meet that criteria even while being able to work full-time ... but with the 50% reduction, that 8 hours of activity is all that the patient is able to do, and then must come home and collapse into bed in order to be able to work the next day. I lived that way for quite a while ... yet there are still doctors who don’t believe that I desperately want to work and have never had any intention of quitting my job to be supported by either a husband or the government.

The facts that I worked against the odds for years don’t square with their interpretation that women don’t want to work, so they discount the fact that for years I struggled to work full-time until it became totally impossible, and go with the interpretation they prefer, that I don’t want to work and want SSDI because it’s just a little inconvenient or a little painful for me to work. "You could work if you wanted to"; no, I want to, but my employer said I can’t work. "You could work if you tried harder"; how much harder can you try when just getting to the office leaves you on the verge of collapse? I was there, I was not calling in sick, but I wasn’t accomplishing much, because I was too sick to work. My boss and everyone else in the office saw for themselves that I was trying; the doctor, who wasn’t there, thinks he knows better than any of the eyewitnesses what was going on.

Similarly, many male doctors automatically assume that women are prone to hypochondria. Objective symptoms, such as fever, fainting, vomiting, diarrhea, loss of motor control, are obvious signs that something is physically wrong. Reports of those symptoms are discounted, as the doctor interprets the patient’s conclusion "in short, I just plain don’t feel well" as hypochondria without taking into account that she has described a number of specific symptoms. The first doctor I saw in 1987 convinced my husband that he was not seeing what he thought he was seeing; I didn’t really have any of those objective symptoms that my husband had seen for himself. The doctor said they weren’t there, therefore, not only was I imagining them, but my husband was also imagining them; disbelieve your own eyes and believe only what the doctor tells you.

Dr. Carol Jessop, one of the pioneers in CFS, sent a number of desperately-ill female patients to a male virologist. He returned all of them with an unwarranted psychiatric diagnosis. Finally, Dr. Jessop sent him a male patient, who was nowhere near as sick as the women; he was returned with the diagnosis that it was obviously a viral ailment, but one that there was no test for. To this day, we find the same thing – men’s symptoms are taken more seriously. Women are sent away with misdiagnoses of depression, hypochondria or menopause, while men are typically given a more in-depth work-up.

My boss, who had similar symptoms, but nowhere near as severe as mine, was flown to the far end of the state for additional testing; no one ever suggested to him what was suggested to me, that he go home and tell his spouse "I don’t want to work any more, you have to let me quit my job." He was eventually diagnosed with something else, but he stayed on my case that I could not accept a diagnosis of "nothing" when it was so obvious to him and everyone else in the office that there was something very wrong.

He couldn’t believe that the doctor couldn’t see what he was seeing, but the simple fact was, the doctor didn’t want to see it ... he wanted to see a scheming manipulative *itch who wanted to quit her job, and that’s what he saw, even when the evidence showed that the woman was struggling mightily to keep her job and panic-stricken at the thought of losing it.

You’ll find this in all facets of life: people see and hear what they want to see and hear. In response to one post, I got two very different responses: a woman caring for a terminally-ill patient marvelled "how can you stay so damn chipper dealing with what you deal with?", and a woman who’s always looking for sympathy for her minor inconveniences interpreted the very same post as me begging for sympathy and cash donations! She knew that in my situation, she’d be whining and begging for someone to help her, therefore, she could not comprehend that I was simply reporting in an unemotional journalistic fashion on the reality of my challenges.

But, it’s more troublesome when it’s doctors who "interpret", because their false interpretations can cost someone their job, their eligibility for disability benefits, or even their life. How many CFS patients, feeling disbelieved by their doctors, have resorted to suicide because they weren’t getting the help they needed and were constantly being told "you’re just faking/lazy/crazy"? And, in many cases, the doctor’s attitude affects their family’s attitude: if the doctor says you’re faking/lazy/crazy, then the doctor must be right.

Fortunately, my boss was not as awed by doctors as my husband, and my boss kept after me until I got a diagnosis. The doctor was not going to convince my boss that he didn’t see what he thought he saw, because my boss had the courage of his convictions. And once I had the diagnosis from a specialist who was researching the viral component of CFS, I had what I needed to lean on when any other future doctor tried to tell me there was a purely psychological explanation for my problems.

If your doctor seems to be interpreting your statements to fit what he wants to hear, don’t try to change his mind; it won’t work. Change doctors instead. Many of our patients have found that a female doctor is more likely to listen to them and interpret accurately, rather than attributing all their problems to lazy, crazy or menopausal. You may actually get more help from a female generalist with an open mind than you would from a male rheumatologist whose mind is already made up about what CFS is.

Two views on dropping CFS as the name

Judith writes:

It is true that I haven't been active online for a long time.  I  simply have
been too sick and scarily undermined financially.  HOWEVER,  I've been
reading lots, was active for years and years re the name of our  illness, and have
respect for some who support "ME/CFS."

I myself have used it with physicians and others.  My reason has been  that
because "CFS" has come to be increasingly recognized as an illness and not 
just some excuse to cover up that I'm totally or majorly psychosomatic, or lazy, 
or all the other demeaning things "CFS" has afflicted me with (!).  I 
thought then that just using "ME" would give me an illness in the eyes of others  as
something they knew nothing about, or as an effort on my part to medicalize 
whatever was wrong with me, and on and on.  And I was worn out having to 
provide explanations that probably wouldn't be accepted anyway since "ME" was  not
something in common or medico-scientific parlance.

HOWEVER, "CFS," the name applied to so many patients and used by some 
respected people who have published in first-rate journals, describes one thing  and
one thing only: the fear, mixed with ignorance and laziness, by some 
physicians in the late '80s to use the name that most closely describes a  disease or
cluster of diseases BECAUSE those doctors wrongly believed that in  order to
be connected to an illness that the rest of the medical world would  respect
that illness had to have some very specific marker.

This fear was seen in other fields that wanted to be considered respectable 
scientifically.  One I'm very familiar with because it was what I studied  was
sociology.  American sociology went off on a very different tangent  from
some of the richest sociological European sociological works and tried to 
describe human behavior in groups by using numbers and numerical scales.  I 
remember sitting in class and saying to myself, "this is crazy"--it adds nothing  to
the understanding much less the predicting or changing of human  behavior. 
And because of that I started to take the maximum number of  courses I could
take in the philosophy of science, where some very good thinkers  "helped" me
understand my reactions.

It has been now stated and recognized that those who first realized that 
there was a disease involving at least the brain and the muscles and maybe the 
immune system have now increasingly been vindicated in their observations.  
And while had this research been done closer to the naming of the illness 
"Myalgic Encephalomyelitis" it might have been named something somewhat  different,
once named and subsequently so validated by increasingly solid  scientific
research and clinical observations that name should be reinstated  until such
time as there is an accumulation of solid scientific grounds to  rename the
disease (which rename will hardly be "CFS" or "CFIDS."

So I have decided that I will give up the comfort of getting the  recognition
that "CFS" is beginning to confer (especially since very few doctors  know
what it depicts anyway, and use "myalgic encephalomyelitis" knowing I do  have
to have the decency to explain that in a lot of the literature and in  popular
parlance this illness has been and will be for a while (unpredictable  how
long) called "CFS."  And if the person wants to know more I'll tell  them, which
of course I wish I didn't have to spend energy on.

But I refuse to be complicit with equating "CFS" with "ME."   Especially
since one is an illness and the other is an interesting but awful  reflection of a
gross misunderstanding of medical nosology not to mention the 
characterization of the symptom clusters that actually exist.

I don't think we should worry about the folks who go bananas about "itis" 
because on conventional measures of inflammation those with ME haven't 
apparently been shown to have inflammation in the "encephalomyo."  There  has been
observed amongst so many patients evidence of this being an illness  where
inflammation of some sort is very much a part, let it be, again, until  there is
some breakthrough in research that might be cause enough to rename  "ME-itis."

Funny thing in a manner of speaking, I am finding that increasingly  clinical
people speak more comfortably of "fibromyalgia" when describing or 
explaining some feature of my many symptoms.  And it's not just the  pain.  It's other
symptoms as well. 

When we get some truly wise epidemiological studies we may begin to see 
certain subgroups emerging that will speak to a number of these issues.  In  fact
it is tragic this hasn't yet been done.  If each of us could imagine  if we
don't have a doctor to whom we can tell all the weird symptoms we have  that
wander through our bodies and don't easily follow patterns but patterns do 
sometimes emerge, each of those stories, those so-called and demeaned anecdotes, 
when compiled, with good demographic categories, and even some diaries, there 
would be I think the clarification of many issues including if FM can be a 
separate disease or always a set of symptoms in a subset of people with ME, of 
portraits that may start sounding like the inflammation that's recognized as 
inflammation in other diseases, and so much more.

I'd love to continue in this discussion but things are sufficiently bad  with
me now that I must, if typing, use those muscles and brain cells for  helping
find money or volunteers and also spending more time pacing, which is  right
now almost mandatory. 

I think I've said this before.  I received Social Security Disability  before
the late 1980's, in 1986, and my doctor, my lawyer, and I used the  British
ME literature which to everyone's surprise got me Social Security  Disability
in the U.S.  It was an accident that I found out about the  disease called ME. 
But I was in a temporary remission and could get to a  medical library and
some librarian, when I mentioned "benign myalgic  encephalomyelitis" which I had
heard used from Alexis Shelokov, M.D. found me an  article on that topic,
which article led me to a British organization who put me  in touch with people
like Betty Dowsett, M.D. and others.  And that was a  very vital set of
connections.  Too bad that SSDI is so pitifully  inadequate for people who haven't
worked at a good job long enough to allow for  a monthly SSDI payment that now
leaves me in penury and cannot be lived  on.

Please, I do beg you, to consider droping the equating of ME with CFS as 
"ME/CFS" which means very specifically "ME or CFS."  They are not either  or. 

Thanks.

Judith Wisdom
USA

Erik responds:

"CFS" has a meaning that everyone should understand:
It is the term that was applied to an illness that the ME literate
doctors present at the time, Gordon, Shelokov and Hyde believed to be
ME.
This re-naming was performed by the CDC for the specific reason of
disallowing credibility for ME.

Whether one chooses NOT to be complicit in connecting ME and CFS is
not really meaningful and changes nothing, as the characteristics of
the illness AND the actions of the ME literate doctors have already
done so in a manner that cannot be "undone".

Just imagine what would have to be accomplished in order to
completely "disconnect" CFS from ME. 
All the copies of Osler's Web would have to be burned, countless
medical records destroyed, many tons of evidence which document the
immune abnormalities must be buried forever, references on the
internet erased, and all the survivors and witnesses would either
have to die off or forget what happened.

Wouldn't it be simpler to just stick to the truth?

"Chronic Fatigue SYNDROME" is the rotten name given to an illness
which is commensurate with ME, but so many people went into mind-melt
moronic-fixation brainlock over the "fatigue" word that they wound up
spending decades fighting with horribly ill people and lumped them
into  "fatigue that is caused by anything and everything", so when we
say "CFS", we are forced to specify exactly what kind of "CFS" we are
referring to - the Canadian Consensus Guidelines kind.

There. 
Isn't that easier and more truthful than the alternative?
-Erik

Tuesday, March 4, 2008

HAPPY (?) ANNIVERSARY TO ME

20 years ago today, I got my diagnosis.

Who would have ever believed that two decades later, we'd still be waiting for an FDA-approved treatment?  That there would be no cure?  That CDC would have done almost nothing toward finding the real cause of the problem?

Instead, CDC has spent the past 20 years obfuscating.  When they couldn't make the original patient cohort provide the test results that they wanted (proving we were just depressed), they re-wrote the criteria so that they could do research on people who really were depressed, and then pass off their depression-caused fatigue as the same thing as our viral-onset fatigue.

Because the research pools were polluted with people with fatigue from every cause under the sun, they couldn't find a common denominator.  However, as a long-time CFS researcher observed about their failure to duplicate Elaine DeFreitas' viral research (because they refused to follow the same protocols), "they don't WANT to find anything."

Like everything else in Washington, the answer is money and politics.  That soon after the AIDS virus, CDC didn't want to admit they had another incurable virus on their hands.  And, since CFS patients weren't dying, they would collect disability benefits for a long time, which was not acceptable to the insurance lobby.  However, if they could portray CFS as mere depression, under many disability policies there's a two-year limit on benefits for mental illness, and if they could portray it as hypochondria, then there would be no benefits due at all.

Despite a Social Security Department ruling saying that CFS is a "medically determinable illness" and that it is physical in origin, my first SSDI judge thought it could be cured with counseling and anti-depressants, and denied my application because I wasn't getting either (both of which have repeatedly been proven useless against CFS).  The second judge has ignored what the Court of Appeal has said about the disabling nature of CFS, what they have said about the limits of what accommodations ADA requires to be provided, and continues to insist that with my qualifications, some firm would be very happy to hire me and give me accommodations that are far in excess of what the Court of Appeal has said ADA requires.

At this point, I expected to be cured.  I certainly didn't expect to be fighting a losing battle for disability benefits, and haveCDC's website saying that it's not necessary to do the tests which would be abnormal.  Yet, here we are -- and some people have been fighting the battle even longer than I have -- still basically at the same point that we were 20 years ago.  Still sick, still disrespected, still having to prove every damn day to some uninformed person (including doctors!) that the problem isn't depression or laziness, it's documentable immune and neurological abnormalities caused by a virus.