hunter1899
Senior Member
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I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.
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I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.
I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.
I've endured tens of thousands, they weren't the deciding factor in my overall condition.
The thought that it might make me worse permanently is a different story.
From MEAction: GET (graded exercise therapy) and CBT (cognitive behavioral therapy) are not safe for ME – summary of survey results
"Following treatment, over two thirds (67.1%) of those who underwent GET alone reported deterioration in their physical health. Three quarters (75.4%) of those who underwent GET as well as CBT reported deterioration in physical health, and for the majority (55.9%) this was a major deterioration. Following roughly the same pattern as impact on physical health, a majority (53%) of those undergoing GET experienced a deterioration in their mental health. This increased to 62.9% when the respondent had also undergone CBT."
Note though, some people do experience some benefit from CBT in that it can help them learn to cope in certain ways, but it's no cure. And a few rare people actually benefit from GET but because ME/CFS is sometimes misdiagnosed it's possible those people had a similar condition instead of ME/CFS.
From what I've read, it seems the people who get permanently worse from PEM are most often the ones that keep pushing mentally and/or physically, or are pushed by family and doctors. Rest and staying within your personal energy envelope are incredibly important for managing ME/CFS.
I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.
Generally no, I although I have heard some rare cases where ME/CFS patients get a tiny bit worse after each crash.
What might make your ME/CFS worse however is if you try to exercise or exert yourself during a PEM crash. Pushing yourself while crashed is not a good idea.
There are many stories in the UK of young children with ME/CFS taken away from their parents by social services, brought into hospital, and then coerced into doing exercise. This is usually against the wishes of the parents and the child, but for children under 16, medical authorities can take children from their parents.
The halfwitted psychiatrists in the hospital that coerce these kids to do exercise are not even aware of PEM, and they push the children to do more and more graded exercise therapy (GET), even if they are crashed from the last exercise session. This often makes the ME/CFS permanently or semi-permanently worse.
What might make your ME/CFS worse however is if you try to exercise or exert yourself during a PEM crash. Pushing yourself while crashed is not a good idea.
I've made myself permanently worse more times than I can remember. I advise being very cautious.
So Hip what do you make of the study references above?
Just to make sure, is MEaction talking specifically about ME or are the combining ME and CFS as one condition?
Also, would PEM busters like Hip listed prevent this permanent damage? Or do they just mask the symptoms?
Also, would PEM busters like Hip listed prevent this permanent damage?
Yes has happened to me a few times trying to exercise. I have pushed really hard and set myself back permanently and never recover the points of energy I lost.I’ve heard warnings from a few folks that just one PEM crash can cause you to get permanently worse!?!? Holy shit this is scary if true.
So for everyone who said yes it’s happened to them, can you describe your specific condition? What viruses you tested positive for? So you have fibro, hashi, etc? CFS or Me.How long you’ve been sick, etc. Trying to understand if there’s a pattern to how PEM affects us permanently. Even though I know real patterns in our world are hard to come by.