Discussion in 'General ME/CFS Discussion' started by nanonug, Mar 3, 2018.
This was the express intent of the criteria.
I realize there’s an old thread on this but, to be a little more current do PWCs here feel their malaise is the same as early on or has it progressed in one
or more areas. You read in other forums where people are intimating interest here and there about their future state, sic to be able to do this or that,
travel in particular, worry over seeing a long lost friend or relative due to potential of increased PEM, or concern about downright decay.
How and why/or not is an interesting concept.
I, for one, without hesitation would classify my condition as having progressed. I didn’t start off more or less sofa-bound. Then, we get into Progessive Systemic Atrophy, PSA, perhaps another modifier, ergo to PEM? (Get confused with all these acronyms and we’ll soon be getting drafted...into the NHL, or NFL...etc =&
My PEM has morphed a bunch of times, including delay of onset, duration, intensity, and additional symptoms. In the mid 90s PEM would take a few weeks to start recovery, by which time I would crash again. Right now my PEM lasts about three days, though I am shaky for days after that, with a delay of a few hours before it kicks in.
Uk might well be different to USA. I know ron Davis uses CFS quite often for his son. If my dad referred to my very severe ME as CFS here in the uk I'd hit him.
CFS here has been utterly tarnished by the wesselys school. GPs and the public think CFS >> tiredness >> long time thought to have no organic cause >> now showing some but behavioural intervention and rehabilitation or good old time should be the answer for most. We can't win by compromising ME as ME/CFS as it's always CFS or CFS/ME here with ME just a tag on Name for placating patients.
SEID is a fine upgrade for me until we know more but it has been widely shunned by patient groups here so Its little Used and in reality CFS still reigns. Obviously in time with research CFS could take on a different meaning and respect but I think it's currently a noose around our Necks and have not understood the resistance to SEID.
The medical profession have specific meaning for encephalitis , it's not given to any neuroinflammation.
Do you mean encephalomyelitis which is inflammation of the brain and spinal cord?
I'm still mystified by this debate between ME and CFS. I'm not convinced my brain and spinal cord are inflamed, though I fit the IOM ME/CFS to a T and was diagnosed by a top specialist, so calling it ME doesn't make sense to me. I do have chronic fatigue, though, and PEM, which everyone agrees is a cardinal symptom of this disease.
Practically in getting treatment, I've found it more useful to use any other ICD10 code, as there's no real treatment accessible for folks with R53.82 or G93.3.
In the end, I don't care what anyone calls it, I just want treatment help me improve.
‘Sorry your illness bounces around so much. That shakiness is troublesome for me as well. It can even be embarrassing eating
around other people. Sometimes I feel like I’ve got palsy.
I was a Lake Tahoe ‘victim’, at least it correlated to onset. Frankly, The real stuff started early 90’s, after a flu that cycled for ~5 years - of just feeling awful repeatedly w/o much PEM, per se. It stayed pretty steady for years, with remissions for long periods followed by crashes beginning on 2nd day and lasting a week. I could do light exercise, like easy cycling.
The next 10 years were more periodic downs with recovery to baseline, functioning range dropped to ~50% - 70%.
The last ~10 years have been progressive decline with short periods of remission with lots of rest, especially progressively worse after legal battle 10 years ago, functionality dropped to ~30%-60%. The last 3 years have been more steady down, with lots of sofa time, mostly homebound. I try walking daily - not far, just enough to keep the machine working. Avoid PEM like the plague.
Completly agreed, most significant (even if it used to appear on my own list only as 4th or 5th symptom).
I would think urgently: These should be recognized as attempts, if there would be any doctor who would be able to grasp such a thought. Trying to differentiate between "ME" and "CFS" leads to nonsense here when dealing with an example of that cloud for longer, I strongly guess...
In my experience/view too.
What´s about SCREW? Because this disease can screw you up from inside.
But sensible meanings for the characters would be needed as well.
At the recent Clinicuans' Summit in Salt Lake City, the doctors seemed to agree on the name ME/CFS.
You can also try a Google Site Search
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