bbc.co.uk/news/health-43490335
Has anyone seen this article? What are your thoughts?
BBC article on research controversy - Myalgic Encephalo...
BBC article on research controversy
Written by
Starry
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3 Replies
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All I know is it didn't work for me. Made me worse.
GET is discredited among ME community however there are still health 'professionals' (for want of a proper word) that prescribe it and I am sure others who are forced to try it because of the lack of proper treatment options.
lavenderkay DO NOT lower your expectations - you are telling yourself you can't/wont be able to do so you wont!!
Yes at this time our lives, (as poor as they may be), we can do very little, but I refuse to accept this is how my life will now play out. I have made fantastic improvements going from sleeping 2o hours a day interspersed with vomiting and retching and now I sleep 10 - 12 hours in a single block and am awake the rest of the day. My activity is limited and overdoing it can floor me for a few days but things are getting better and better.
The depression and anxiety are gone and I am learning more about myself and health in general than I ever knew before. This summer I plan to drive to the coast, ( a journey several times long than I have tried this past 3 - 4 years. I will spend more time working in the garden and living life more to the full.
We have a very debilitating condition that unfortunately is poorly understood even by the so called experts so we need to become our own, lowering expectations is not the answer. Increase expectations your body will be influenced by your mind, Jesus if a therapist is saying lower them I tell them to go jump. We can keep high expectations but not let that bring us down. We have high expectations for the future which will force us to explore avenues we wouldn't do if we were accepting our limitations.
If Stephen Hawking accepted his Dr and limitations he would have died in the 60's!!!! No way will I ever accept any lowering of my goals.
Our lives WERE MEANT TO BE LIKE THIS. For some like myself physical health problems multiplied by a refusal to slow down = ME and I have indeed learned several tough lessons being ill. However, with lessons learned I am coming out the other side. I take a variety of supplements and pills but most of all I have gone vegan.
In the early days I saw a wonderful Dr - William Weir who gave me great advice and support which has helped:
Gluten & Dairy free - I've since gone vegan with even better results
Vit D - THIS IS VITAL - many/most of us are missing this vital vitamin and need supplementation.
Mindfulness & Meditation
There were a couple of other things but I can't remember then but if you search my posts they are there.
I now take Q10, L-Argentine, Vit D, Calcium & Magnesium, Gentle Iron, Iodine in the form of kelp. There were a couple of other things too but I ran out and stopped them.
There has been some debate over the causes of ME with some very highly respected Drs putting it down to a viral illness. I myself was treated with antivirals although they were very VERY hard on my system so much so I had to stop - might be an area to explore for you.
Best of luck and tell that therapist you want to adjust but not lower your expectations. Don't forget to use your illness to learn and grow - that is why I believe they are there!! For what its worth - if you need any help gimme a pm and I'll be glad to help.
I've done no damage. I have tried to help and support you, if you have missed that then I am afraid there is more going on with you than ME unfortunately. Something that no one only yourself will exacerbate - I wonder how many you blame for your misery. When you are at home seething over the perceived damage ask yourself - How pissed off will raffs be, the answer is not at all.
I asked you not to lower expectations and to fight to live a good life, I used my precious energy to try and help lift and motivate you, I doubt you want more sympathy than support. I in no way regret what I have typed and I can tell you that advice is solid.
If you want to play the poor misunderstood patient then so be it - an awful waste of life but read this first and if you want more help PM me:
psychologytoday.com/us/blog...
PS a huge thank you to Starry & peege for their support and kind words - much appreciated.
PPS - lavenderkay - you say I misunderstood then launched into an attack - do you normally treat people who make mistakes with such hostility and blame? Also do you care about any harm you cause me with your unfounded allegations and blame?
