Friday, May 6, 2011

When Your Caregiver Is Also Your Significant Other

Quote of the Day

"As a pediatrician I have been involved with disabled people for over 30 years.... I have seen babies with disabilities like cerebral palsy grow up into disabled adults. I know from personal experience how tough their lives and the lives of their parents can be. No amount of money can make up for being disabled, but a civilised society should be doing all it can to enhance their quality of life. I am shocked and saddened that instead our Government is reducing their benefits and adding to their burdens.
                  Professor Sir David Hall FRCPCH, FRCP, FRCP

Abnormal test results in ME/CFS

 

Laboratory abnormalities in ME/CFS include abnormal SIgA; weakly positive IgG3 (linked to gastrointestinal tract disorders); positive IgM; increased T4:T8 ratio (which always corresponds with disease severity); very low numbers of NK cells, with decreased cytolytic activity; low levels of circulating immune complexes (two-thirds of ME patients have insoluble circulating immune complexes); autoantibodies (especially antinuclear and smooth muscle); a particular HLA antigen expression; PCR evidence of abnormalities in muscle; a positive water loading test with erratic arginine-vasopressin release; a significant prolactin release in response to a single buspirone challenge; positive SPECT scans (which show reduced blood flow through the brain stem in a particular pattern not found in any other illness or disease process apart from ME/CFS – QJMed 1995:88:767-773); abnormal fMRI scans; abnormal EEG (80% of ME patients show prolonged jitter); a positive VP1 test; positive mast cells; low pancreatic exocrine function; low copper response test; anomalies in trace element metabolism, especially low red blood cell levels of magnesium, zinc and chromium;  low potassium levels; low peripheral oxygenation levels, with poor perfusion and pulsatilities, and increased hsCRP. According to Peter Behan, Professor of Neurological Sciences at the University of Glasgow, as these abnormalities have been shown to occur with such regularity, if they are present and if the clinical picture is right, then a firm diagnosis of ME can be made.  In 2001, evidence was presented by SCM Richards et al (including Anthony Cleare who co-authors papers on ME/CFS with Simon Wessely) at the British Society of Rheumatologists' Conference in Edinburgh showing that 53% of ME/CFS patients were excreting in their urine significant levels of creatine and other muscle-related metabolites including choline and glycine, indicating on-going muscle damage, as creatine has been shown to be a sensitive marker of muscle inflammation and is objective evidence of muscle pathology.

Snippets of information about ME/CFS (including symptom list)

The overwhelming degree of exhaustion in ME/CFS is unmistakable and can never be confused with chronic tiredness or "fatigue", nor can the objective signs that are invariably present in ME/CFS be mistaken for chronic "fatigue"; such signs include:

 

  • labile blood pressure (this is a cardinal sign in ME/CFS)
  • nystagmus  and vestibular disturbance (vestibular dysfunction seen in 90% of patients with ME/CFS)
  • sluggish visual accommodation
  • fasciculation
  • hand tremor
  • neuromuscular incoordination
  • cogwheel movement of the leg on testing
  • muscular weakness
  • marked facial pallor
  • postural orthostatic tachycardia syndrome (POTS)
  • positive Romberg
  • abnormal tandem or augmented tandem stance
  • abnormal gait
  • evidence of Raynaud's syndrome and vasculitis (vascular signs cross dermatomes)
  • mouth ulcers
  • hair loss
  • singular reduction in lung function (shortened breath-holding capacity seen in 60%)
  • enlarged liver (not usually looked for by psychiatrists)

Cheney on CFS

 
 
 In his now world-famous Testimony before the US FDA Scientific Advisory Committee on 18th February 1993, Dr Paul Cheney said: "I have evaluated over 2,500 cases….We have seen the worst and the best of the range of scenarios that can befall a patient with this disorder.  At best, it is a prolonged postviral syndrome with slow recovery or improvement within one to five years.  At worst it is a nightmare of increasing disability with both physical and neurocognitive components.  The worst cases have both an MS-like and an AIDS-like clinical appearance….We have lost five patients in the last six months….The most difficult thing to treat is the severe pain….The most alarming is the neurological and neurocognitive elements of this disease.  Half have abnormal MRI scans, 80% have abnormal SPECT scans, 95% have abnormal cognitive evoked EEG brain maps.  Most have abnormal neurologic examinations….40% have impaired cutaneous skin test responses to multiple antigens.  Most have evidence of T-cell activation….From an economic standpoint, this disease is a disaster. 80% of the cases evaluated in my clinic are unable to work or attend school…The yearly case production, if plotted, is exponential….The medico-legal aspects of our practice steadily grow as this disease eats at the fabric of our communities.  We admit regularly to the hospital (with)…inability to care for self….CFS is an emerging, poorly understood disorder with a distinctive clinical presentation.  I am not at all sure that it is as heterogeneous as some would lead you to believe….This disorder is a socio-economic as well as medical catastrophe that will not end….This disease is too complex to rely on standard medical orthodoxy to explain it….Listen to patients with an open mind.  Failing that, then listen to those who have spent countless hours with a thousand patients.  Most of us have some wisdom to impart and most of that came from patients".

“Grey” Information about ME/CFS Part 2

 
Attention: Doctors who think it's all in our heads
 

In his presentation entitled "The Diagnosis of Chronic Fatigue Syndrome: An Assertive Approach" that was co-authored by Dr Charles Lapp, Dr Paul Cheney stressed the need for the case for diagnosis by objective criteria.  He said: "The central problem is case selection.  Many patients with CFS are excluded from studies because they seem 'too sick' to have CFS….CFS cases are mixed in with non-cases.  Inappropriate controls are sometimes used. Some investigators, aware or unaware of a bias, attract or include in their studies the patients who best fit their view of CFS.  This so-called selection bias can markedly affect the observations of a study….The medical evidence cited for CFS asserts that the following are present more or less in every patient during the course of his or her disease: T-cell activation, discrete immune defects, viral activation or re-activation, exercise-related dysfunction, and evidence of brain dysfunction or injury.  While none of these tests can stand alone to 'diagnose' the illness, an array of these tests can be used to support this diagnosis" (it is worth recalling that in the UK, NICE has effectively proscribed these tests). There are a number of criticisms given for using (these) tests in the diagnosis of CFS.  They include the following: (1) We lack a gold standard for determining this disorder:  if a test abnormality has been shown in the medical literature to be associated with a certain disease, such as a positive ANA in lupus, then it is a valid test to be used in supporting a clinical diagnosis…. (2) Even if there are test abnormalities which can be associated with CFS there is no need to make a more definite diagnosis because there is no treatment for the disease: if this were a valid argument, then it would also apply to multiple sclerosis, many cancers, and even AIDS.  Documentation of an illness by objective criteria is important not only to confirm the diagnosis, but also to reassure the patient…Though there may be no scientifically validated treatment options for CFS…there are many therapeutic rationales based on test abnormalities which can defend empiric therapy….In the everyday practice of medicine, empiric therapy is often warranted in severe or functionally devastating illness….(Furthermore), the ability to successfully argue for disability is an extremely important aspect of therapy for this disorder….(3) CFS is a 'self-limited illness': this misperception of CFS is pervasive among many clinicians and the lay public.  A debilitating illness lasting years or longer is in fact not self-limited, and it deserves considerable medical attention….Good documentation of this disorder lays the groundwork for future empiric intervention".

 

Cheney then listed 22 physical findings in ME/CFS, stating that "Contrary to suggestions by some investigators, abnormalities on physical examination, although sometimes subtle, are usually present"; he listed 10 routine laboratory tests that are often present in ME/CFS patients; he listed his proposed set of tests for ME/CFS which include 4 tests of immunity and 5 tests of discrete immune defects; 5 tests of viral activation or re-activation; 5 tests of exercise-related dysfunction, and tests of brain dysfunction (structural scans, functional scans and neuropsychometric tests, including the Halstead Reitan battery). Cheney continued: "CFS clinical and bench researchers are developing an array of tests which are increasingly sensitive and specific for CFS – particularly when used in combination.  When patients present with symptoms that suggest CFS, we believe it is in their best interests to …employ these tests to confirm the diagnosis and to document the nature and extent of each case.  This information…enables the patient to make appropriate lifestyle adjustments (including defence of disability claims when necessary)".

 

Cheney's article was followed by a comprehensive overview as an aid to the diagnosis of ME/CFS by Dr Jay Goldstein, who addressed skin disorders in ME/CFS; headaches; eye problems; ear, nose and throat problems; pulmonary complications ("Dyspnoea, either at rest or on exertion, is the most frequent [pulmonary] complaint, but is probably centrally mediated"); cardiac abnormalities ("coronary artery spasm and microvascular angina should be considered"); gastrointestinal problems ("Gastrointestinal complaints are very common, and symptoms of irritable bowel form an integral part of the CFS spectrum of symptoms" – this should be compared with Professor Peter White's assertion in 2006 that "bowel symptoms are not part of CFS/ME"; St Bartholomew's Hospital Chronic Fatigue Services, Stakeholder comments on Chapter 6 of the draft NICE Guideline on "CFS/ME", page 316); pelvic disorders ("Perhaps the most common pelvic disorder in CFS is endometriosis….Adnexal masses and polycystic ovarian syndrome occur with greater frequency in CFS….A much higher percentage of my patients in a CFS practice have developed ovarian carcinoma that I experienced while practising family medicine"); genitourinary complaints ("Dysmenorrhea is also more common in CFS patients, even if endometriosis is not present….The primary genitourinary complaint in the male with CFS involves prostatic discomfort, frequency, and nocturia"); musculoskeletal abnormalities; neurologic abnormalities ("fasciculations are fairly common, as are tremors….A Hallpike test is sometimes abnormal in vertiginous patients, as is the Romberg test.  Muscle weakness is common….Patients should be followed for the development of multiple sclerosis or, more commonly in my experience, immune polyneuropathy"); associated carpal tunnel syndrome (CFS) and thoracic outlet syndrome (TOS) ("carpal tunnel syndrome and thoracic outlet syndrome are fairly common in CFS"); haematological abnormalities ("CFS patients often complain of easy bruisability or spontaneous ecchymoses….Platelet function studies are sometime abnormal").  Goldstein noted that: "The sed rate is often very low. Immune complexes and positive anti-nuclear antibodies are encountered very frequently….Elevated levels of various cytokines and their receptors are often seen"); he discussed at  length the cytokine abnormalities found in ME/CFS and other distinct laboratory abnormalities, as well as SPECT scan abnormalities, evoked responses testing, PET scan abnormalities, lesions detectable by MRI scans, abnormalities on neuropsychological testing, and functional capacity evaluation (ie. an assessment of the patient's ability to perform work demands and activities of daily living). Goldstein concluded by stating that he knew of no other mechanism than a limbic encephalopathy that could produce the diagnostic constellation seen in ME/CFS, but he pointed out that "Secondary adrenal insufficiency due to a central mechanism relating to CRH deficiency could be responsible for many CFS symptoms" (in which he specifically included vertigo, intermittent blurred vision and alopaecia). 

Grey information about ME/CFS

"Grey" Information about ME/CFS    Part 2:   1991 – 1993

Compiled by Margaret Williams     5th May 2011

http://www.meactionuk.org.uk/Grey-Information-Part-2.htm

Part 1 of these extracts from the "grey" literature on ME/CFS (1956 –
1990) can be seen at:
http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm
 

Wednesday, May 4, 2011

Xcelerator

Xcelerator

Since it was essentially a prototype for inversion rides, Xcelerator had (and still has) its problems.  If there aren't enough people on board, it has difficulty ascending the tower and does a rollback.  This requires a reset and several test launches.   It also can't run in the rain….not even a light drizzle…because it hydroplanes.

I can find so many analogies here it's ridiculous.  Exciting new concept presented to us at CFSAC October 2009.  Huge horsepower with Annete Whittemore and Dr. Dan Peterson initially joining forces.  Not enough people on board with funding and replication studies.  Plenty of rollback.  Lots of rain.

* * *
Comments on Ila Singh not finding XMRV -- welcome to the next round of the CFS roller coaster ride
 
 

It's a Rocky Road to Diagnosis of 'Invisible Illness': Then It Gets Rough

 
 

Disability Claim? You're Not Paranoid... They Really Are Watching You

 

Monday, May 2, 2011

The Holocaust and ME/CFS

    Today is Yom Hashoah, Holocaust Remembrance Day, the day for
remembering the six million Jews who were murdered 1941-45.
    A very sensible article in yesterday's New York Times, covering the
opening of a new Holocaust museum in Los Angeles, cautions people
quite correctly against seeing universality in the Holocaust and
comparing it to other tragedies of mass murder. No, the Jewish
Holocaust was unique, Stalin's starvation of the Ukrainians in the
1930s was unique, the Armenian massacre was unique, and so on.
    Nonetheless, there are certain aspects of human behavior which
facilitated the Nazi Holocaust that one cannot help but notice in the
actions of present-day societies. These are sometimes the same
behaviors that have facilitated the medical establishment and even
democratic governments to turn their backs on the suffering caused by ME/CFS.
    Certainly we patients are not murdered, but many have been left
bed-bound and house-bound in conditions not unfairly termed a 'living
death" by patients.
These helpless are estimated to number 250,000
among the United States' one million ME/CFS patients. This suggests
that, of the world's likely 17 million ME/CFS patients, some four
million have been barred by disease from partaking in all but the
tiniest occasional morsels of life.

    To be absolutely clear; our situation is not remotely horrific to
the level of history's legendary mass slaughters and I don't mean to
even halfway imply that it is. But it does count as yet another  very
nasty outcome for humankind due to certain flaws in human character
that one saw at work during the Holocaust:
   
    Most widespread of flaws is the human tendency to shrug our
shoulders at another's plight while our minds build denials to save
us from having to pay attention. Back then a neighbor might well have
pretended to himself that the Jewish family next door would just be
taken off someplace uncomfortable for a while, and one could hardly
bother oneself about every such difficulty. Similarly, in more modern
times man's aptitude for convenient denial has helped certain medical
professionals deal with the complex problems posed by ME/CFS by
writing it off as psychological. That way a person can avoid too much
bother while also avoiding guilt. Non-professionals have done the
same.  "It's just a little depression," or "he's playing sick," they
said, to dismiss us and escape the burden of caring.

    Another common flaw is man's propensity to dehumanize his fellow man
as the occasion requires. This crops up over and over in the study of
warfare atrocities -- probably since the beginning of time. The Nazis
put a decade of effort and cunning into the dehumanization that
facilitated making Europe "Jew-free," starting with the Nuremberg
laws and ending with them convicted as vermin. Could this have
happened to ME/CFS patients? If you take out your copy of "Osler's
Web" you'll find a stream of examples where U.S. government officials
seem to regard the patients as a lower life form,
starting with the
first CDC epidemiologist who found the Incline Village patients
unbearably weird. Meanwhile, across the sea in Britain,
psychiatrists' characterizations make us out as deluded, lazy,
manipulative parasites deserving of harsh treatment.

    The third, more societal, flaw is the tendency of institutions and
professionals to fall in line with the prejudices of authorities.
In
the Nazi era subject authorities and institutions by and large
supported the ostracism of Jews, hardly ever resisting orders and
sometimes even magnifying them, as in Vichy. Similarly, in our time
most hospitals, universities and professionals on both sides of the
Atlantic have joined in to shun and boycott any work on ME/CFS that
might confirm the serious biomedical condition that CDC and MRC alike
have denied. Dr. Kenneth Friedman's talk to the NIH SOK on April 8th
provided horror stories about the consequences to one's career of too
much sympathy and interest in ME/CFS.  Meanwhile in Norfolk a key
hospital has refused to house ME/CFS research to be funded by an ME charity.

    The deeds of the Holocaust led philosopher Hannah Arendt to her
famous theory of "the banality of evil."  In this she wrote off
Hitler's murder czar Adolf Eichmann as a mere bureaucrat who followed
orders. But an essay in this week's Forward newspaper debunks Arendt
forcefully. Wrote novelist Thane Rosenbaum, "The darker truth,
however, was that the evidence against Eichmann and his facility with
true evil was self-evident and self-condemning. He was no mere cog;
he cynically and knowingly deployed his anti-Semitism in the hope of
advancing his career."

"How I learned to prevent relapses"

New featured success story on the Lapp-Campbell website:  www.treatcfsfm.org.

"How I Learned to Prevent Relapses"
The author writes, "By avoiding those things that created relapses, I was able
to smooth out my life considerably, reducing both the frequency and severity of
relapses, and eventually eliminating them."

Explaining the new website, Dr. Lapp said, "What you'll find here is the
combination of the Stepwise Approach I developed many years ago with Dr. Paul
Cheney and the tools taught in Dr. Campbell's classes. This is the same
integrated approach I now use with my patients. We have found that with
encouragement, lifestyle changes, and targeted medications, more than 80% of
people we treat can improve significantly."

Bruce Campbell, Ph.D., Executive Director
CFIDS & Fibromyalgia Self-Help Program
www.cfidsselfhelp.org

Donepezil No Help for Memory Deficits in MS

 
Aricept has also been suggested to help the memory defects of CFS, but this trial doesn't make us hopeful that it'll work.

Sunday, May 1, 2011

An Avatar for you

Right click on the picture, Save Picture As, and then upload it to places like Facebook and CNN.com, wherever you're allowed to have an avatar.
 
HAPPY AWARENESS MONTH, everyone!  Make sure you make everyone aware of ME/CFS/XMRV, and how shockingly little money is budgeted to finding a cure.  In the US, it's a fraction of 1% of the annual loss of productivity.  Dr. Jason estimates it costs the country $26B to have us sick; the income taxes alone on that amount are several Billion a year -- if they'd throw that much money at the disease, they could cure us and start to recoup that money as soon as we go back to work.  But nooooooooooooooo!
 
Don't forget to mail your letters to the media and your elected officials.
 

HAPPY AWARENESS MONTH!

If you haven't already, scamper over to Zazzle.com and order this button (as well as T-shirts, tote bags) and mugs) for Awareness Month.  My stuff arrived in just a couple days, so you still have time to get an order delivered by the 12th.

Montoya Research Volunteers - for those in the Bay Area

 
If anybody is interested, please contact Jane as indicated below. At first, she will do a short phone interview with you to verify that you are eligible to participate (basically, that you are a CFS patient). Then, you will have to go to the Stanford Campus on Arastradero Rd. in Palo Alto (can't send the blood in from anywhere else) where you have to answer a few more questions, fill in a few, easy forms and then Jane will draw your blood. It's about a 20-minute appointment.

Jane Norris P.A.-C.

CFS Study Coordinator

1070 Arastradero Rd. Suite 100

Palo Alto, CA 94304

T (650) 723-8126

F (650) 723-6450

jlnorris@stanford.edu