Llewelyn King Talks w/ a Parent with TWO ME/CFS children

[Cort]

From Llewelyn King

"I'm glad to advise you that a new video, No. 88, is posted on the ME/CFS Alert site on YouTube.

It is a very enlightening interview with Leah Williams, who is bringing up two children afflicted with ME. Her struggle and triumphs are compelling.

The interview was filmed in the home of Dr. Alan Gurwitt and Charmian Proskauer in Newton, MA."

 

[Abrin]

Two children?
Wow it really makes you wonder about the genetic component, huh? O.O

 

[GG]

Two children?
Wow it really makes you wonder about the genetic component, huh? O.O

Yes, and she mentions another family with 3 children!

I found the part about her son exercising, and feeling like hell" afterwards. And she would comment you are not supposed to feel that way. Must be hard for kids who get this illness, because they have no idea what it felt like to be a healthy adult

GG

 

[Cort]

Two children?
Wow it really makes you wonder about the genetic component, huh? O.O

I know of two genetic studies going right now - one with Simmaron and one in Salt Lake City with Dr. Bateman

Thus far the few genetic studies done suggest a high genetic component - relative to other diseases - for both ME/CFS and FM...Higher than autoimmune diseases if I remember correctly..

Just think what we could do if we really had the money!

 

[Abrin]

Must be hard for kids who get this illness, because they have no idea what it felt like to be a healthy adult

@GG
I actually grew up with this illness. Believe it or not, the hardest part for me hasn't been that I have no idea what it is like to be a healthy adult. The hardest part for me was when I was growing up was that doctors were still in disbelief that children could even get it so I spend my entire childhood being yelled at for how lazy I was. Not only by the people around me, but even by my own family as well which is truly mind-bending when you release that my father had been diagnosed with ME/CFS.

I think a part of the major problem that I have with pacing is that you are so impressionable when you are growing up and I think that a huge part of me emotionally truly doesn't even believe that I am sick since I had it drilled into my head my whole childhood that I was lazy and selfish and that I was just making excuses.

Logically, I know and it is beyond obvious to my friends and my husband. But emotionally.....those messages still play in my head on a constant loop. It is so hard to try and pace to make my symptoms easier to live with when I have it on constant loop how I am 'just a liar and a faker and that I am selfish and aren't trying hard enough.'

 

[GG]

@GG
I actually grew up with this illness. Believe it or not, the hardest part for me hasn't been that I have no idea what it is like to be a healthy adult. The hardest part for me was when I was growing up was that doctors were still in disbelief that children could even get it so I spend my entire childhood being yelled at for how lazy I was. Not only by the people around me, but even by my own family as well which is truly mind-bending when you release that my father had been diagnosed with ME/CFS.

I think a part of the major problem that I have with pacing is that you are so impressionable when you are growing up and I think that a huge part of me emotionally truly doesn't even believe that I am sick since I had it drilled into my head my whole childhood that I was lazy and selfish and that I was just making excuses.

Logically, I know and it is beyond obvious to my friends and my husband. But emotionally.....those messages still play in my head on a constant loop. It is so hard to try and pace to make my symptoms easier to live with when I have it on constant loop how I am 'just a liar and a faker and that I am selfish and aren't trying hard enough.'

Sorry to hear that, that sucks! I would have trouble believing this illness if I did not have it myself. Sure some in the community would not believe me as well, if they saw all I can do!

GG