Thank you, Mary Schweitzer!
I thought I understood the whole PEM thing until I read this. as for the politics of it that's another story. Mary you are brilliant and obviously a natural teacher. I just spent two days with my baby grandson, helping out my daughter. for most people a delight and a pleasure, but now bed bound and looking lazy to outsiders.
Most of us trying to have a bit of a life are doing a non stop PEM test.
By the way, is Dr Bateman supporting the CDC in this madness?
Thanks Mary, your brain is working very well! ~ Posted by: sesame12, 10/9/13
You are the FIRST person to explain this oddity in a way that I can understand it and I can share this with others and they will understand it.
Before I was really sick, I would frequently sign up with friends at their gym for a "free week trial" period. I'd do okay at first, but would always notice and about how my Heart Rate would shoot up freakishly with me going 1/3 the pace of my friends. We'd make jokes about how weird it was.
I had a one time doctor's offc treadmill test (after resting for a week) and it came out in the "couch potato" normal range but didn't shoot up like it had so many times before.
How can I help you (walk through hot coals) get this 2-day test to become the standard?
~ Posted by: BlBrinSoCal, 10/9/13
It is absurd how terrible people with this syndrome get treated. If there is anything I can do to help the cause, please let me know. Sometimes I think I got this syndrome to understand it better and help others. Any thoughts or comments on banding people together that want to fight the CDC and get this more publicized? I have personally been a 12 year sufferer. ~ Posted by: mikiem, 10/10/13
Sign the petition
The government shutdown means Congressional staff are not being paid and unlikely to be in their offices. The only issue Congress is dealing with right now is re-opening the government.
It would be best for now to sign the petition supporting and thanking the ME/CFS experts who wrote Secretary Sebelius that they fully supported use of the Canandian Consensus Criteria and urging her to abandon the IOM study to redefine the disease. ~ Posted by: mezombie, 10/9/13
Bias, Bias, Bias
The Brits seem to have a thing about early life experiences causing ME/CFS, just as they did 50 years ago about MS.
When data gathering in such studies is flawed the results are flawed. Any undergraduate Psychologist should be able to read this study and tear it apart – just from this statement and the given refs alone:
"In addition, the role of early adversity also warrants consideration, particularly given the evidence of an increased rate of childhood trauma in patients with CFS. Around 50% of patients report at least one type of childhood trauma [46, 47]. It has been estimated that childhood trauma increases the risk of CFS between 6- and 8-fold [33, 48] with a graded relationship between the severity of the trauma and the risk of developing CFS [33, 46, 48]."
Each of the refs are poorly controlled:
Criteria for diagnosis mostly Oxford criteria
- Inherent bias when questioning "ill" subjects about early life experiences. Sick people are more likely to report such associations or events than "well" people, no matter what the adult illness. These studies do not control for this bias.
- A bias towards including "depression" and "anxiety" in cfs patients as being a cause or risk factor for ME/CFS.
A poorly constructed method of observational or self reporting of "psychopathological" symptoms. Same bias operates as in point #2.
Take this comment: "Nonetheless the abnormalities are subtle, and there is marked variation in basal and challenge tests in CFS patients and a real risk that these so-called abnormalities are simply confounds or epiphenomena."
Isn't this a great way to dismiss all the other research, eg. by Marshall-Gradisnik and Staines et al which identify clear immunological abnormalities. And the recent work identifying VO2max reduction on second exercise test.
This is how the church treated Copernicus. ~ Posted by IanH 10/7/13