Blog post by Galen Warden: For Family and Friends

[ahimsa]

Blog post from Galen Warden about how family and friends can support ME patients.

Includes links to research and medical descriptions of ME.

https://www.galenwarden.com/post/for-family-and-friends

Your family member or friend has told you they have ME, ME/CFS, or CFS. But what is that? They look fine and, on occasion, they seem perfectly normal to you. But they have days when they’re too exhausted to participate socially. Maybe they’ve told you they can’t talk on the phone, they can’t attend celebrations, or work like they used to, and you’re not sure what’s going on. It’s confusing because even doctors don’t seem to know what ME is, or how to help them.

Yes, it’s true that many medical professionals have little or no knowledge of ME because they have not learned about it in medical school. Whether you are a friend, family member, or medical professional who’s trying to understand someone with ME, I’ve provided peer-reviewed, medical studies and articles to help you learn that this is not somatic, not psychological, but a clinical illness recognized with a diagnostic code and by the international medical community.

It’s never too late to learn and to help someone you know who is genuinely suffering.

 

[Hutan]

I’ve provided peer-reviewed, medical studies and articles to help you learn that this is not somatic, not psychological,

Somatic means 'relating to the body', 'physical'. It's the opposite of 'psychosomatic'. It's easy to get confused about it, as I think even just mentioning that symptoms are somatic raises the possibility that they are psychosomatic. But, the use here is incorrect.

There are a number of incorrect statements in this blog, although the suggestion that people with ME/CFS be believed is of course important. There are some interesting links to material about post-dengue ME/CFS.

 

[ahimsa]

Somatic means 'relating to the body', 'physical'. It's the opposite of 'psychosomatic'. It's easy to get confused about it, as I think even just mentioning that symptoms are somatic raises the possibility that they are psychosomatic. But, the use here is incorrect.

There are a number of incorrect statements in this blog, although the suggestion that people with ME/CFS be believed is of course important. There are some interesting links to material about post-dengue ME/CFS.

Good catch.

I confess that I did not read this whole thing, just skimmed.

I got the link somewhere else and just passing it on.

 

[rvallee]

Somatic means 'relating to the body', 'physical'. It's the opposite of 'psychosomatic'. It's easy to get confused about it, as I think even just mentioning that symptoms are somatic raises the possibility that they are psychosomatic. But, the use here is incorrect.

There are a number of incorrect statements in this blog, although the suggestion that people with ME/CFS be believed is of course important. There are some interesting links to material about post-dengue ME/CFS.

And yet somatizing is defined as the process of psychosomatics. The language of medicine is awful, it often distorts its own meaning to achieve a desired outcome, however dishonorably. It's imprecise, arbitrary, capricious and too often used as a weapon. It's very hard to have a mature discussion when words mean whatever is convenient in the moment and that very language can change between contexts precisely to manipulate and mislead.

Psychosomatics takes an ends justify the means approach, but as it always does, the means define the ends more than anything. Lies, fraud and myths as a means guarantee and end that is nothing but quackery precisely because it's nothing but lies, fraud and myths.

 

[Sean]

Psychosomatics takes an ends justify the means approach,

That is, starting with a definite conclusion and working backwards to justify it, however arbitrarily.

 

[bobbler]

Somatic means 'relating to the body', 'physical'. It's the opposite of 'psychosomatic'. It's easy to get confused about it, as I think even just mentioning that symptoms are somatic raises the possibility that they are psychosomatic. But, the use here is incorrect.

There are a number of incorrect statements in this blog, although the suggestion that people with ME/CFS be believed is of course important. There are some interesting links to material about post-dengue ME/CFS.

I've had a look at the page linked to and appreciate this format - it is something that is often missing to have one page that you can point someone towards that brings together the 'overall' and points to links that are both official and the ones that do a good job of explaining something succinctly (often these aren't the same pages). And cover the key aspects someone might want to know/check/verify vs you might need them to get as a 'if you remember these few things'.

It seems gentle, not making expectations too high of those who don't have ME reading it (in believability without proof, or amount of help or out of their way they might want to go), without expecting those with ME/CFS to be 'too brave' or pitied or one of the many other pitfalls.

Anyway that is a hard job to pull off, so appreciated to have this.

On the somatic thing, I don't know - with SSD: somatic symptom disorder, being added to DSM -V , and that particular area (somaticisation, somatic disorder, anything related) being one pushed by the biopsychosocial crew it makes for a tricky one to argue when it is their redefining of the term (and of course guess what the fix and 'underlying cause' suggested is) that is making for the accepted meaning from most. Somaticisation definitely means emotions affecting the physical.

They've moved onto 'mark II' which seems to involve the return to neuresthenia and the olde 'functional vs organic' sales pitch, at the same time as expanding via the DSM with new 'rule-in' diagnoses which of course can't easily be ruled out/excluded by the presence of it being explained by something else (is that where 'somatic' comes in?).

I've had a look up and according to the internet somatic cells include: blood cells, hair cells, nerve cells, muscle cells - does this expand to the 'systemic' involvement such as immune systems or patterns and indeed the downstream effects in things such as HPA and the various other axes and homeostatic type things within the body? DO we really all need to begin getting dragged onto their terms just because they want to muddy up medicine and how people can understand each other for strategic/tactical reasons on their part?

I do wonder whether all of this is just a distraction to cause chaos in being able to argue back meaning time is wasted that could be spent on productive arguments and progress on the logical rather than having to point out something makes no sense etc so find it frustrating to have to be thinking of all of this (noone else cares outside ME/CFS). I haven't at this stage worked out the best tactic for that yet tho

 

[bobbler]

That is, starting with a definite conclusion and working backwards to justify it, however arbitrarily.

Or asserting a conclusion and if you can't justify it with logic just making it sound like it is so complicated that most will conclude the reason you as a reader can't make sense of it is you and not them having written it to not complete the circle. I do wonder whether it is like the ear-worm tactic in marketing of deliberately annoying ads - normally with certain songs or catchphrases, but it makes them sticky with people wondering 'eh how does that work, but it must if that person is getting away with saying it and not being corrected'.