Does It Matter What You Call It? Lay Beliefs for Overcoming CFS, ME, and PVFS

[HowToEscape?]

interesting - is there scientific evidence that obesity is controllable by individuals? I thought it has been found there are gut bacteria and genetic aspects

Change food intake to near zero and 100% of subjects lose weight. Such Trials have happened, though those might be better described as tribulations.

 

[RogerBlack]

Despite that a specialist diagnosed me with ME/CFS, my charts say "primary immunodeficiency: IgA deficiency" because that's what my immunologist chose. He couldn't see putting "chronic fatigue" down because he knows what's up.

I suspect a very small fraction will ever potentially see an immunologist before diagnosis.

My understanding is that IgA deficiency is not usual amongst patients with CFS.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC120010/ (a 2002 review)

(iii) IgA.
One study reported decreases in IgA (58) but attributed this to abnormally high control values consistent with their being no difference in IgA. Four other studies found this variable to be normal

Having an 'unusual' diagnosis may not actually help at all.

If you are seeking help from whatever source, on the basis of an illness, and your presentation is atypical, because you 'really' have CFS, and your diagnostic label is a symptom of that I'm unsure how it helps.
Sure - in the case where the diagnosing physician or practice knows your actual condition and what would help or hurt - great.
But that can happen with CFS too.

 

[alex3619]

CFS is it. There is no available diagnostic code in the computer system for ME, ME/CFS, or SEID. My doctor can enter ME as his diagnosis, but the computer system just auto-changes it back to CFS.

This happened to me in hospital here in Australia maybe five years ago. The system here did not allow an ME diagnosis. To be fair I have never been formally given an ME diagnosis, I was diagnosed CFS three times starting with Holmes criteria, but I fit the CCC and ICC, though due to not being acute onset I do not fit Ramsay's definition.

 

[JaimeS]

My understanding is that IgA deficiency is not usual amongst patients with CFS.

It's pretty common for us to have low IgA, or low IgG subclasses... often with elevated IgE or even (more rarely) elevated IgM.

If you are seeking help from whatever source, on the basis of an illness, and your presentation is atypical, because you 'really' have CFS, and your diagnostic label is a symptom of that I'm unsure how it helps.

I'm sorry -- maybe it's brain fog, but I can't parse this.

 

[NelliePledge]

Change food intake to near zero and 100% of subjects lose weight. Such Trials have happened, though those might be better described as tribulations.

problem is people not being able to reduce/maintain reduction due to stuff like problems with leptin, ghrelin etc which isnt a matter of willpower or psychology

 

[RogerBlack]

problem is people not being able to reduce/maintain reduction due to stuff like problems with leptin, ghrelin etc which isnt a matter of willpower or psychology

Well. I managed to lose weight, and then I put it back on due to my CFS as I went through a bad patch, when my dietary choices consisted of a) choosing food, or b) large block of cheese.

Willpower matters lots, especially for us.