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Great news. But for long term pwME, or maybe I'm just speaking for myself, after being booted around by many, along with suffering from this horrible disease, this news is not as exciting as it would have been 30 years ago. The price we've payed is exceedingly high. Like @rvallee says, no one...

Very much agreed, @Solstice. "A better return on investment", absolutely! Instead of the disability insurance industry treating most claimants like criminals, it seems a more financially beneficial action for them would be to invest in biomedical research. It may be paltry by comparison, the...

This is a memorable example @Peter Trewhitt. Amazing your friend got through this physically. But what an ordeal! If only someone had believed her early on, and done a chest X-ray. I know of two other times where chest and abdominal X-rays were vital, but never thought of, nor pursued by...

Also, as above, imagine all the hell that supposed pwMUS has gone through with the disability insurance industry, government assistance programs, doctors, friends, colleagues and family. Denied the very testing that would definitively support a biomedical diagnosis and open the door to more...

Yes, @rvallee you speak the brutal truth. Imagine someone denied more expensive testing, because it's assumed they are a MUS person. Now imagine that person many years on getting that expensive in-depth testing they knew they needed and had asked for a long time ago. Imagine that person's...

One thing I'm left wondering about is the second fellow with multiple system atrophy. It didn't sound like there is any treatment for this, just acceptance. Agreed, @Arnie Pye. My experience and past university studies tell me that women are the more likely candidates to receive a MUS label...

"Well, this theory must be right, it uses an impressive word salad." :wtf::banghead::grumpy:

Thank you for posting this @Dolphin. I read Osler's Web. Excellent book. I'm really looking forward to reading Hillary Johnson's new book! A suggestion for those who can afford it: donate a copy to your library.

Both sides of neck. Left often the more swollen side. ME since 1985 on. Still get painful neck, armpit and groin lymph nodes.

@Peter Trewhitt @hellytheelephant I spent decades and lots of money trying to recover, or improve substantially. Always chasing the dream of returned vigour, and health. Nope, never happened. This shouldn't repeatedly happen! Quacks and charlatans are just lurking like spiders in their...

Possibly not a good fit here but this is an example I've seen: more senior healthy people placing the usual demands and expectations on pwME just because they are younger. Dismissing the disease because the pwME is younger and can supposedly "cater to" the more senior individual. An example of...

I've not tried Qi Gong, but a more exacting yoga, ( I can't recall the name) left me really exhausted and very sore. (This wasn't your modern day hot yoga.)

Thank you @dave30th for your continued great articles! I agree with Lady Shambles comments regarding the concern ME will ultimately be left out of the funding/research loop due to the lure of big money going into LC research. I also see the risks of putting ME, LC, and other post viral...

Oh my! Where does one start?!!! I've come across people who say they've recovered from ME, but with a bit more digging I find out they have to continue to keep a tight rein on their schedule, and rest quite a bit. IMO opinion that's not recovery - that's management. Another point that was not...

Absolutely, yes. I recall, the psychologist I saw over 30 years ago, felt very strongly that "cfs" was a mental health issue caused by a problematic personality type. I presented it as a physiological disease. This was aggressively disagreed with by the psych.

@Wonko A serious topic. Frustrating to have this, and zilch medical help. But your sandwich comment made me chuckle! There are no sandwich icons here, but maybe cake will do? :cake: How many times have people with health concerns had experiences similar to what you described? :banghead: :(...

Yup. Been working on my ferritin level, which was low. RLS was quite bothersome, especially later in the day. With more iron intake my RLS has lessened. I can't recall if mainstream medicine views the cause of RLS a mystery or not. Of course ferritin is not a go-to test.

Another thought about being called Type A by that psych of long ago: here I was with an OK career, with one degree, being aggressively accused by someone with two degrees, and much better pay, that I was ambitious, competitive and aggressive. Hhmmm......

When I was first diagnosed in the early 1990s, a psychologist told me I have a type A personality and that's why I had "cfs". Type A people as the ME/CFS Skeptic article says, are ambitious, aggressive and very competitive. This therapist diagnosed me as Type A, just a short while into our...

My POTS was much worse with ferritin deficiency. And I had many premature heart beats, if that's the correct term. Interesting, my hemoglobin was elevated when my ferritin was low. Of course, the hemoglobin was tested first, and ticked the box for iron status. A short period later I requested...