5 ms·

You should research Chronic Fatigue Syndrome / Myalgic encephalomyelitis. The medical community, from my experience, does not handle this type of diagnosis wel

You should research Chronic Fatigue Syndrome / Myalgic encephalomyelitis. The medical community, from my experience, does not handle this type of diagnosis well. I’ve experienced post-viral fatigue symptoms that lasted well over 8 months, and almost all doctors I visited (ranging from primary care to neurologists) suggested simply rest and/or believed it was depression related (even though I have never suffered from depression before). I hope your wife gets better. Remission from these symptoms is possible, but sadly, I don’t think you’ll get more information out of the doctors.

hh3k0 6y ago
> The medical community, from my experience, does not handle this type of diagnosis well. I've read some time ago that Stanford scientists developed a blood test. It'll be harder for docs to ignore once there's a proper diagnostic tool.
- H_Pylori 6y ago
  >It'll be harder for docs to ignore once there's a proper diagnostic tool. Simon Wessely is already trying to cover is ass [0]. What a wonderful guy, he richly deserves his reputation. [0] https://www.sciencemediacentre.org/expert-reaction-to-study-investigating-a-potential-biomarker-for-chronic-fatigue-syndrome-me/ https://www.sciencemediacentre.org/expert-reaction-to-study-...
- rtp 6y ago
  Yeah, in its initial study, the nanoneedle had a 100% specificity and selectivity, and according to Ron Davis - main author - the results have held up as they've increased the number of tested people. That said it might also give a positive result for other illnesses. Hopefully a follow-up will be published soon.
  - dm319 6y ago
    Be wary of anything that claims a 100% sensitivity and specificity. It usually indicates the wrong gold standard or poor methods.
nicoburns 6y ago
Did you ever find a treatment other than rest?
- newsbinator 6y ago
  Not an expert, but I suspect that if there were a treatment that makes a clear difference, the whole disease+treatment combo would be well known by most doctors and the treatment would be widely suggested. I could be wrong though: are there common instances of diseases with solid cures or treatments that many doctors generally misdiagnose or believe lack treatments? I wouldn't be surprised in either direction.
  - PaulKeeble 6y ago
    A huge number of healthcare systems around the world still use graded exercise therapy (and CBT) and that is known to actively hurt patients with the condition, so I don't think that is sure at all. You would have thought the basis of medicine where first do no harm might be their first instinct but it really isn't.
H_Pylori 6y ago
I think you are on point. There is a high probability that (a subset of) the symptoms experienced by COVID survivors are due to Myalgic encephalomyelitis / Chronic Fatigue Syndrome. Maybe COVID is what it takes to finally acknowledge the existence of this illness.
dm319 6y ago
I'm a medical professional that had a post- viral syndrome following the flu. In retrospect, even though I didn't realise it at the time, it may have lasted for over a year. It easily fit the definition of depression, but less so the negative symptoms. Could also be classed as stress or anxiety. It went away when I cancelled all my commitments (at the time my director of studies said I was on a course to fail, and advised I handed over other responsibilities in the run up to the exams to other people). Turned out it was overkill and I had plenty of free time. During this time I returned to my normal self, and I'm more self-aware of the issue now. In ME/CFS one of the treatments is 'graded exercise therapy'. Given my experience, I should have done something like this earlier on.

hh3k0 6y ago

> The medical community, from my experience, does not handle this type of diagnosis well. I've read some time ago that Stanford scientists developed a blood test. It'll be harder for docs to ignore once there's a proper diagnostic tool.

H_Pylori 6y ago
>It'll be harder for docs to ignore once there's a proper diagnostic tool. Simon Wessely is already trying to cover is ass [0]. What a wonderful guy, he richly deserves his reputation. [0] https://www.sciencemediacentre.org/expert-reaction-to-study-investigating-a-potential-biomarker-for-chronic-fatigue-syndrome-me/ https://www.sciencemediacentre.org/expert-reaction-to-study-...
rtp 6y ago
Yeah, in its initial study, the nanoneedle had a 100% specificity and selectivity, and according to Ron Davis - main author - the results have held up as they've increased the number of tested people. That said it might also give a positive result for other illnesses. Hopefully a follow-up will be published soon.
- dm319 6y ago
  Be wary of anything that claims a 100% sensitivity and specificity. It usually indicates the wrong gold standard or poor methods.

nicoburns 6y ago

Did you ever find a treatment other than rest?

newsbinator 6y ago
Not an expert, but I suspect that if there were a treatment that makes a clear difference, the whole disease+treatment combo would be well known by most doctors and the treatment would be widely suggested. I could be wrong though: are there common instances of diseases with solid cures or treatments that many doctors generally misdiagnose or believe lack treatments? I wouldn't be surprised in either direction.
- PaulKeeble 6y ago
  A huge number of healthcare systems around the world still use graded exercise therapy (and CBT) and that is known to actively hurt patients with the condition, so I don't think that is sure at all. You would have thought the basis of medicine where first do no harm might be their first instinct but it really isn't.

H_Pylori 6y ago

I think you are on point. There is a high probability that (a subset of) the symptoms experienced by COVID survivors are due to Myalgic encephalomyelitis / Chronic Fatigue Syndrome. Maybe COVID is what it takes to finally acknowledge the existence of this illness.

dm319 6y ago

I'm a medical professional that had a post- viral syndrome following the flu. In retrospect, even though I didn't realise it at the time, it may have lasted for over a year. It easily fit the definition of depression, but less so the negative symptoms. Could also be classed as stress or anxiety. It went away when I cancelled all my commitments (at the time my director of studies said I was on a course to fail, and advised I handed over other responsibilities in the run up to the exams to other people). Turned out it was overkill and I had plenty of free time. During this time I returned to my normal self, and I'm more self-aware of the issue now. In ME/CFS one of the treatments is 'graded exercise therapy'. Given my experience, I should have done something like this earlier on.