Article: Post-Exertional Malaise: Perception and Reality By Jennifer M. Spotila, J.D

You can view the page at http://www.forums.aboutmecfs.org/content.php?199-Post-Exertional-Malaise-Perception-and-Reality-By-Jennifer-M-Spotila-J-D

 

Cort as always great to see. I know though a vital contribution to understanding eg. muscles and other "end on organs" problems adds to knowledge -it is peripheral only though nasty. I look sadly at the range of symptoms spoken about on PR and know them all. Yes all there for me too. We seek the big answer and will pursue.

 

This thread is labelled "Perception and Reality" - Who's ? Send the Psycos back to Square one - poor things not quite as clever as they think .

 

I must say that I am just so disturbed really at what has happened to the research over the past 5 or six years. Doesn't this seem important?

CFS patients and sedentary controls do not recover from muscle exertion at the same rate. The maximum amount of force exerted by leg muscles was objectively measured, and both groups showed the same pattern of decrease in force during repetitions. The controls recovered to full force within 200 minutes, and did not differ from their pre-exercise levels 24 hours after the exercise. In contrast, CFS patients not only failed to recover to full force, but an even further decline in force was observed at 24 hours.5

That was five years ago and nothing has been done that subject. Nor has Schilling published anything - again - these are positive studies. If someone is going to go to the trouble of spending alot of money to fund an original study why would they not follow up after that study has positive findings???? I just don't get it.

Imagine if any of these research areas had received even a fraction of the research funding going to XMRV (or any normally funded disease?). We would have 4 or five studies coming out a year and we would very quickly know what's going on. Here's its been FIVE years and we haven't had another study....Its appalling....:Retro mad:

I agree it is disappointing more progress has not been made. But just to point out that that Lorna Paul study is from 1999 (11, not 5, years ago).

ME Research UK have supported some research by her since then including a Ph.D studentship (not for her but for a student to work under her).

Of course a big problem in the ME/CFS world is how little money is raised for research in many countries. Even in Canada - how much is raised there for research? I haven't evidence much is raised. Awareness levels and numbers diagnosed are low in some countries but there needs to be more of a focus on raising money in my opinion. Especially outside the US which gives the highest per capita for health research, research budgets are relatively small when you consider all the different areas and different conditions they have to cover.

 

MY 17 years with ME/CFS has been a progression through different groups of symptoms. The first 10 years was more Immune type symptoms with the "never ending flu", sore throat, swollen lymph glands, severe fatigue, cognitive dysfunction, muscle pain and sleep problems.....but I didn't have PEM. Then 7 years ago the disease evolved into being Neuro. The Immune type symptoms stopped completely, but now I began the really bad ones.....Severe OI with NMH and POTS, Severe cognitive problems, and PEM.....currently PEM is by far my most severe and disabling symptom. So for me, the PEM came on with the progression of the disease. Regardless, it obviously is a "cardinal symptom" and should be a serious research focus for pinning down a biological marker and leads to etiology. I really appreciate these posts. If we could find a way to limit the PEM alone, many of us would be so much higher functioning.

 

I agree it is disappointing more progress has not been made. But just to point out that that Lorna Paul study is from 1999 (11, not 5, years ago).

ME Research UK have supported some research by her since then including a Ph.D studentship (not for her but for a student to work under her).

Of course a big problem in the ME/CFS world is how little money is raised for research in many countries. Even in Canada - how much is raised there for research? I haven't evidence much is raised. Awareness levels and numbers diagnosed are low in some countries but there needs to be more of a focus on raising money in my opinion. Especially outside the US which gives the highest per capita for health research, research budgets are relatively when you consider all the different areas and different conditions they have to cover.

Now I'm even more disappointed :Retro redface:... I agree - research funding is the key.

 

MY 17 years with ME/CFS has been a progression through different groups of symptoms. The first 10 years was more Immune type symptoms with the "never ending flu", sore throat, swollen lymph glands, severe fatigue, cognitive dysfunction, muscle pain and sleep problems.....but I didn't have PEM. Then 7 years ago the disease evolved into being Neuro. The Immune type symptoms stopped completely, but now I began the really bad ones.....Severe OI with NMH and POTS, Severe cognitive problems, and PEM.....currently PEM is by far my most severe and disabling symptom. So for me, the PEM came on with the progression of the disease. Regardless, it obviously is a "cardinal symptom" and should be a serious research focus for pinning down a biological marker and leads to etiology. I really appreciate these posts. If we could find a way to limit the PEM alone, many of us would be so much higher functioning.

I think the different disease courses are so interesting - and probably vital to uncovering what has gone wrong in each individual..You have the flu problems eventually leading to PE and severe OI (a tough symptom!)....that is a different disease path than me. Mine was gradual but nevertheless pretty rapid onset that quickly graduated into PEM; in fact I think of it as synonymous - yet I am in much better shape physically than you. Yours had an immune entree; I had sore throats for the first ten years but none of the other fluey symptoms. Very interesting stuff that we're going to try to capture in our patient data program. - Nobody is looking into that.

 

Hey, whatever happened to Part 4 of the article series? 1-3 seemed to appear in rapid succession and then...no 4.

 

Thanks for the slide - it's really nice to have something to show friends who wonder why I don't exercise my troubles away.

And I agree about the different courses of disease onset - it is interesting. Also difficult, looking back, to know exactly which signs were the actual onset. I count PEM as my first easily recognizable symptom, and it is still one of the most debilitating. So interesting to think what one thing could be traveling all these different routes.