Saturday, February 21, 2009

22 Years and STILL No Treatment/Cure

This week in 1987, I had the virus that resulted in developing CFS.

There's been some research that the severity of the original illness is a good predictor of who'll have the CFS sequelae; I had a 104-105 fever for several days and was delirious much of that weekend. Clearly, a pretty severe infection.

It took me just over a year to get a diagnosis, but here we are 22 years later, and there's still no FDA-approved treatment for CFS. So much time and money has been wasted trying to prove that we didn't have a virus, we're just lazy/crazy/depressed, rather than spending it appropriately to find out what's really wrong.

When an anti-viral (Ampligen) was shown to be effective, it was mired in politics -- about 20 years later, the FDA is still demanding more clinical trials and more paperwork -- as one of the early researchers observed, the FDA could not approve a medication for a disease that CDC says doesn't exist.

FINALLY, and as a result of thousands upon thousands of international research studies proving biological abnormalities, CDC is grudgingly starting to admit that maybe it's not all in our heads. They can't continue to deny it, or they'll look stupid. When I finally read Osler's Web, I was shocked at how much the researchers knew about it by the time I was diagnosed in 1988, information that still was not common knowledge more than a decade later. The media and CDC were still saying "no objective tests", yet, according to Hillary Johnson, there were plenty of things that could be tested for that would be abnormal! Why was all this covered up?

How many patients have died or become permanently disabled as a result of CDC's game playing for a quarter-century? That's the real crime.

Photos of CFS Patients, Please!

Permission to repost. Please repost!

From ME sufferer Rene:

I know I am a pain but I think it is now more important than to show our
faces one way or another. Lets help Antoinette get the longest banner ever.

Let get as many faces of PWME together who are appalled by the NICE stance
on the one size fits all GET/CBT treatment of people

I am still willing to gather as many pics as I can to upload to BEBO where
Antoinette can pick them up. [email protected]. if the link hides it is
renethorpe(at) just swap the (at) for the @ key. and dont
forget to tell me how many years you have been ill

What about those with ME who made it into the court House.. Don't forget
Antoinette managed to get about 70 PWME with her. There would have only been
a few there without that banner.

Parents and carers can send in pics of their loved ones.. And don't forget
we cannot ignore those who have tragically passed away


Smiling or unsmiling the choice is yours. ME affects may different types of
people. Those who can smile through the pain to those who are too ill to
smile. My husbands thought though on seeing a long row of only gloomy faces.
'' What do they all have in common.. mmm they all look miserable sods...must
be depression.' '

Just seen on another website The Autistic group are organising a demo for
their aware week and they are also asking for pics of those who cannot

Take care



Best wishes,
A Hummingbirds Guide to Myalgic Encephalomyelitis:
Hummingbirds break all laws of gravity, nature and survival. Hummingbirds
are symbols of magic and miracles, especially the miracle of resurrection.
The Complete Book of Hummingbird Lore 1989

Friday, February 20, 2009

Lifestyle of CFS patients

The lifestyle of patients with chronic fatigue syndrome and the
effect on fatigue and functional impairments.

Journal: J Hum Nutr Diet. 2009 Feb 13. [Epub ahead of print]

Authors: Goedendorp MM, Knoop H, Schippers GM, Bleijenberg G.

Affiliation: Expert Centre for Chronic Fatigue, Radboud University
Nijmegen Medical Centre, Nijmegen, the Netherlands.

NLM Citation: PMID: 19226353

Background: Little is known about the lifestyle of patients with
chronic fatigue syndrome (CFS) and its influence on symptoms of CFS.
The present study aimed to investigate the lifestyle of patients with
CFS, and to assess whether lifestyle factors are related to fatigue
and functional impairments.

Methods: Two hundred and forty-seven patients fulfilling the Center
for Disease Control criteria for CFS were included. Validated
questionnaires were used to collect data on lifestyle factors,
smoking, intake of alcohol, fat, fibres, fruit and vegetables, body
mass index (BMI), fatigue severity and functional impairments.

Results: Of the CFS patients, 23% smoked, 32% had an unhealthy BMI,
and none had an unhealthy alcohol intake. A majority had an unhealthy
food intake: 70% had unhealthy fat, fruit and vegetable intake, and
95% had unhealthy fibre intake. Compared with the general Dutch
population, significantly fewer CFS patients were overweight.
Significantly more female CFS patients abstained from alcohol, and
fewer male CFS patients smoked. Unhealthy lifestyle factors were not
significantly associated with fatigue severity or functional impairments.

Conclusions: CFS patients tend to lead a healthier lifestyle compared to the general Dutch population. However, no relationship was found between lifestyle factors and fatigue severity and functional impairments in CFS.
* * *
This was just discussed in one of the CFS groups.  Doctors like to blame the patient, but when you look around support groups, you don't see the drinkers and the druggies and the couch potatoes.  You see athletes and vegetarians.  As someone quipped, it's like living a dissipated lifestyle protects you from getting CFS.
My personal suspicion is that the couch potatoes stayed on the couch till they were fully well after whatever virus they had.  The Type A personalities dragged ourselves back to work as soon as we could stand, and the exercise is what drove the virus further into the heart muscle, setting off the chain reaction that became CFS.


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