Saturday, September 24, 2011

IACFS/ME conference Sept 22, 2011 - Patient Day Summary

by National ME/FM Action Network on Friday, September 23, 2011:
It is 0630 and I am up and ready to begin another day of the conference. I was so tired after spending almost two hours after yesterday’s session with a group of  almost twenty me/fm sufferers sitting around Dr. Leonard Jason pouring out their hearts about their lives while suffering from those illness. Two of those people also had their partners sitting beside them for support which was wonderful to see. I was so tired after that I came to my room and went straight to bed.

The first day began with Dr. Hyde announcing that each participant of the conference will receive compliments of the Nightingale Research Foundation the book The Clinical and Scientific Basis of ME/CFS.  A booklet Definition of Myalgic Encephalomyelitis (ME) was also distributed.  There is also a short book Missed Diagnosis available in print or electronically on Lulu.Com.
Midway into yesterday’s agenda it was unanimously agreed upon that all the information presented at this conference will be available on line and through CD’s.  It is important that everyone involved with promoting the validity of these illnesses, or is it one illness? I believe it is one illness with differences in severity and outcomes, but no doubt that there is enough pathology evidenced now that it would be criminal not to proceed as fast as we possibly can with education and more research.

The stunning facts that Dr. Bested released and aired on CBC  Radio, Ottawa, from the extensive statistical research done by the ME/FM Action Network’s  Margaret Parlor confirms that the increase in the numbers (23% in CFS and 13% Fibromyalgia) with three quarters of  million people inflicted now. These statistics are alarming and should alert government officials that something has to be done and done quickly.

Pathology is showing in people’s blood vessels, From what? Medications? Some drugs like Statins can cause serious pain. why?   Why are there so many atrophied thyroid glands, liver and kidney damage?

Dr. Komaroff  spoke and said “Is it cause of symptoms (effects on the brain))  or is it the cause of the cause of the symptoms that makes “wrong energy metabolism” that we all have to live with and why?  Spec scans show reduced areas of signal cognition for speed memory and attention with autonomic dysfunction, causing sleep disorders and Neuroendocrine problems, affecting possibly every system in our bodies.

Test after test shows abnormality from measuring lactic acid in spinal fluid. There is an increased anerobic metabolism in inflicted patients resulting in higher levels of lactic acid.

Why are there an decreased number of natural killer cells  and increased cytokines, more oxidative stress and damage done to the mitrochondria or  the powerhouse where energy is created in our bodies.

Dr. Jason spoke about ways  for people to deal with this debilitating illness by ...
non pharmaceutical intervention, which I thoroughly agree with.  I take no medication except thyroid hormone and treat myself holistically by the exact methods he referred to in his lecture.

Sleep hygiene is very important and we need lots of rest and relaxation  “rest is repair”  “rest means restore” and wind down at least an hour before trying to sleep.  You must feel sleepy, being tired will not put you to sleep, sleepiness will

It is important to resolve the anger that may come from being ill, misunderstood and perhaps maltreated, but anger is self destructive and has to be resolved.

Dr. Ronald Staud spoke on Fibromyalgia, which the information will be available on line. Pain is very complex and the synaptic transmission of pain can be measured with functional MRIs and other scanning, so yes the pain is very real.  One thing to keep in mind is that increased anxiety increases pain signals and pain sensitivity.  Increased pain shows increased atrophy of the brain.  The question is why?

Mr. Hugh Sheyer our legal consultant spoke on the the legalities that people face while disabled and trying to obtain financial benefits.  Each case is individual, depending upon the employer and social benefits and severity of symptoms. The diagnosis should be irrelevant, but that is sometimes not the case.

Dr. Nancy Klimas spoke on the level of neuro-immune dysfunction related to these illness and explained the differences between CFS/me patients and Gulf War Syndromes patients.  CFS patients turn off pathways, Gulf war patients turn on pathways.  They are different, but have same symptoms.  Interesting!!

Annette Whitmore from the Whitmore Petterson Institute In the USA, the research money for MS is 135,000,000 and for ME is 6,000,000.  This ratio has to change as the numbers of people inflicted increase, according to government’s own statistics.
Scientific work is continuing to be done on retroviruses and blood donation from people with ME/CFS symptoms is discontinued. The institute is encouraging medical students to become more involved with these misunderstood illnesses and support patient advocacy groups. ANIDA .  (1) Advocate for neuro-immune disease awareness.  (2) Educate friends and family. (3) Keep writing to Governments.

Ms. Stacey Stevens explained why me/cfs have exercise intolerance and why.  The use of a heart monitor is recommended and keeping within the individual  anerobic threshold  and why.

I am running out of time now, gotta go for breakfast and another busy day.
This is unedited and written from notes I took yesterday.  Please excuse spelling errors and omissions.  Thanks  Judi Day

1 comment:

patrizia giorgi said...



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