Amazing Ted Talk on ME and Autoimmune conditions

[Rhsana]

Love this woman. Beautiful talk;

ted.com/talks/jen_brea_what...

[humanbean]

I thought it was a good talk as well.

I had an odd thought though - I did wonder why she sat the way she did. Surely it must reduce the blood supply to her lower legs and feet?

[bluebug in reply to humanbean]

Some people actually feel comfortable sitting like that. Odd I know but everyone is different.

[Marz in reply to humanbean]

Tailors once sat like that whilst working. Hence the word ' Sartorial Elegance ' - as it is the sartorius muscle that enables the position to be comfy. Rather like performing the Lotus asana in yoga 😊

Not comfy for me unfortunately - still on the journey !

[humanbean in reply to Marz]

Interesting, I never knew that.

I have to keep my body unkinked as much as possible nowadays. I can't even sit with my legs crossed, one leg over the other knee, because the dangling leg goes dead. When I was younger I slept in a foetal position. Nowadays I have to sleep stretched out. I blame smoking for many years for ruining my circulation. (I've stopped now.)

[Marz in reply to humanbean]

I stopped smoking some 6 years ago and didn't notice any difference - I stopped colouring my hair and smoking at the same time - no connection - it was a way to save money when the exchange rate was so poor. 😊

Glad you can sleep well -stretched out !

[humanbean in reply to Marz]

I slept much more comfortably in a foetal position, sadly, but these days my shoulders won't allow it. It took me ages to learn to sleep stretched out.

I stopped smoking nearly 8 years ago now. Sometimes I still get the urge to have a cigarette.

[greygoose]

What about that goitre? I wonder if she's ever had her thyroid tested...

[cwill in reply to greygoose]

If she is anything like me she will have had a strong family history of autoimmune disease and sub-clinical hypothyroidism when diagnosed with the ghastly CFS - was never allowed to call it ME by my Gps as they would react with disgust and claim it was simply in my head and therefore CFS. They actually told me to go away and not come back whilst at my worst and needing the darkened room, able to do nothing for myself or think straight. I had 4 years of deteriorating health with ridiculous fatigue and have been 8 years in the darkened room. The fact that I can type this now so swiftly is the result of the correct treatment for hashis at last. The NHS ignores those of us with this diagnosis and as we know they treat autoimmune disease with the bare minimum if they treat at all. BTW the only thing that I could change whilst permanently in bed was my postilion and I also sat cross legged quite comfortably - relatively speaking.

[greygoose in reply to cwill]

I haven't been able to sit comfortably since I was in junior school! I admire those that can. But, yes, thyroid seems to be the last thing doctors test, and Hashi's, rarely. It's a terrible situation.

[humanbean in reply to greygoose]

I thought she had a goitre. I wonder if it would be possible to contact her, and have her read it. She needs to be helped by people who know about the thyroid.

The people on Phoenix Rising, the ME/CFS forum I read, often give (what I consider to be) dreadful advice to people who have possible thyroid issues.

[humanbean in reply to humanbean]

On the other hand, perhaps I won't comment and hope she reads it. One of the comments on her video is :

"PS I am not responsible for my actions relating to anybody who says, "Have you tried XYZ Something Stupid?"

Unsolicited advice is rarely welcome!

[greygoose in reply to humanbean]

Yes, I see what you mean. But suggesting someone with a goitre gets a thyroid test, is hardly 'something stupid'! It's actually the first thing that should have been tested when she fell ill. But, I don't think I'd have the nerve to do it! Had my head bitten off too many times! lol

[humanbean in reply to greygoose]

Sorry, I didn't mean to imply that testing the thyroid was something stupid.

It's just that I've noticed that with various diseases, particularly the ones that have no explanation, that sufferers are reluctant to accept advice from people who are not sufferers of that particular condition.

[greygoose in reply to humanbean]

True, very true. Oh, well...

[Rhsana]

I also found her take on Male/Female care really interesting - and the history of the Hysteria diagnoses. I have found that I am much more likely to be dismissed as "its all in your head" than my brothers and boyfriend. As much by female doctors as male ones. Why?!