rvallee
Senior Member (Voting Rights)
A few things I've been thinking about.
There is no mention of PEM, by any other name or definition, or neurological symptoms in general. Some neurological symptoms are acknowledged but they are very restricted, the number is far greater but most patients only have a few so in the end most are basically out of scope here, more likely to fall in the MUS/FND void of doom. Most cases will not fit the guidance in practice as neurological symptoms are the most common and only a handful are acknowledged, we know what happens with checkbox medicine.
There is discussion of MCAS and POTS as comorbidities, but neither are treated adequately in clinical practice, there is no awareness or guidance outside of this one here and they are very poorly-handled. There is certainly no discussion of dysautonomia and how there is a spectrum, with the guidance restricted to POTS, that is all that will be considered and none of the resulting symptoms will be considered, only the elevated heart rate on a tilt table test will be considered and if it fails likely blamed on heart inflammation and told to wait it out. So will MCAS and POTS only be considered as part of LC? Because most people presenting with such symptoms will be met with the standard hostility, "anxiety" and/or MUS/FND, it's handled terribly in practice. Those who fail the tilt table test will have that door closed on them.
So taking a typical physician who is very invested in this and wants to help, has read the guidelines through and through but nothing more than is provided within the NHS framework. Certainly no awareness of PEM or the breadth and variation of neurological symptoms. Mention of PEM will be met with either confusion or hostility, it's not covered and should not persist past a few weeks (even though by definition... ugh whatever). And often exercise is advised for POTS so that is what will be advised, after all they don't have ME and so advice against exercise is not applicable here. Also GET has not been "tried" so maybe it's worth a shot, also feeling worse is normal and won't be identified as PEM because, of course, no mention of it in the guidance.
There are also common things like a stiff neck, not covered either, which will mean the only possibilities to think of will be GBS or maybe encephalitis, not helpful here, adds a lot of confusion.
Then of course the typical symptoms are basically presented as a simple list, without any particular order or emphasis. So all basically equal in importance. Certainly little emphasis on the relapsing-remitting, highly fluctuating (it's mentioned but not emphasized in a way that is nearly clear enough) with post-exertional malaise (or symptom exacerbation). Especially in those with fatigue. Exercise is good for fatigue, and you don't have ME so, against, no contraindication. And fatigue is not emphasized here so clearly it's not "chronic fatigue". Or maybe. Depends.
So what happens to the patients who insist on PEM? Will they be offered an alternative ME diagnosis, an exclusion from this guidance and be discharged? Or will just be ignored because obviously exercise is good and not advised against so you should try?
This isn't even half-baked. The more I think of it the worse it gets.
There is no mention of PEM, by any other name or definition, or neurological symptoms in general. Some neurological symptoms are acknowledged but they are very restricted, the number is far greater but most patients only have a few so in the end most are basically out of scope here, more likely to fall in the MUS/FND void of doom. Most cases will not fit the guidance in practice as neurological symptoms are the most common and only a handful are acknowledged, we know what happens with checkbox medicine.
There is discussion of MCAS and POTS as comorbidities, but neither are treated adequately in clinical practice, there is no awareness or guidance outside of this one here and they are very poorly-handled. There is certainly no discussion of dysautonomia and how there is a spectrum, with the guidance restricted to POTS, that is all that will be considered and none of the resulting symptoms will be considered, only the elevated heart rate on a tilt table test will be considered and if it fails likely blamed on heart inflammation and told to wait it out. So will MCAS and POTS only be considered as part of LC? Because most people presenting with such symptoms will be met with the standard hostility, "anxiety" and/or MUS/FND, it's handled terribly in practice. Those who fail the tilt table test will have that door closed on them.
So taking a typical physician who is very invested in this and wants to help, has read the guidelines through and through but nothing more than is provided within the NHS framework. Certainly no awareness of PEM or the breadth and variation of neurological symptoms. Mention of PEM will be met with either confusion or hostility, it's not covered and should not persist past a few weeks (even though by definition... ugh whatever). And often exercise is advised for POTS so that is what will be advised, after all they don't have ME and so advice against exercise is not applicable here. Also GET has not been "tried" so maybe it's worth a shot, also feeling worse is normal and won't be identified as PEM because, of course, no mention of it in the guidance.
There are also common things like a stiff neck, not covered either, which will mean the only possibilities to think of will be GBS or maybe encephalitis, not helpful here, adds a lot of confusion.
Then of course the typical symptoms are basically presented as a simple list, without any particular order or emphasis. So all basically equal in importance. Certainly little emphasis on the relapsing-remitting, highly fluctuating (it's mentioned but not emphasized in a way that is nearly clear enough) with post-exertional malaise (or symptom exacerbation). Especially in those with fatigue. Exercise is good for fatigue, and you don't have ME so, against, no contraindication. And fatigue is not emphasized here so clearly it's not "chronic fatigue". Or maybe. Depends.
So what happens to the patients who insist on PEM? Will they be offered an alternative ME diagnosis, an exclusion from this guidance and be discharged? Or will just be ignored because obviously exercise is good and not advised against so you should try?
This isn't even half-baked. The more I think of it the worse it gets.
