I'm just wondering which guides/resources we've come across are proving most helpful, to both manage and treat Ramsay's disease (also known as SEID, ME/CFS) both for us and our practitioners?
Wondering if helpful for us to gather the best ones we know of here (in one place)?
The ones I'm conscious of, that (from my perspective) feel helpful until research sheds any more light are:
NB..mostly suggests very gentle pottering (...for us to adapt to our varying natural levels...because some of his ideas are way beyond most of us, yet the spirit and intention feels a relaxing one). Also recommends containing computer time eg say to 5-10 minutes at a time, because of energy costs of visual processing.
Warmest thanks for any input....and very good luck for all of us, first of all for the day itself...and also, gently going forwards, with figuring out our priorities for ourselves and any next steps with our practitioners.
Warmest wishes, RockRose
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RockRose
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I have kept SHINE protocol bookmarked endfatigue.com/treatment_op... as much for my own information as my doctor. Makes sense for me when the doctor often seems confused.
Nothing new I can share in a very thoughtful cause bringing hope and education into society that chooses forgetting our existence. Tai Chi when I can trying to meet Dr Smiths pottering that paints a room well maybe in my dreams one day
Thanks so much KMC422, feels valuable to see the explanation of the condition, by a consultant immunologist, alongside UK NHS diagnostic and referral guidelines.
From an initial skim-through, I'm noticing that more is said about treatment for those with mild /recovering CFS/ME than moderate, severe or extremely severe cases, so probably overall most valuable for clinicians at initial presentation and diagnosis, enabling most appropriate referrals and helping eliminate other possible factors behind the fatigue (which also feels vital to pick-up). Thanks again and much appreciated.
Bruce Campbell has designed a variety of instruction lessons and helpful recording and self-assessment tools around pacing.
It is a big task for me, but I recognise that this is the kind of methodology that is going to be most useful as I try to pace. Until now, the instruction to pace myself just resulted in me feeling overwhelmed and confused, and also not a little bit rebellious.
Oh Budgiefriend, I love your honesty, and sharing the experience of initially or sometimes feeling overwhelmed and confused and also not a little bit rebellious. Yes, I get that so much (and admire the spark and spirit !)
This feels a fantastic resource for understanding pacing and I love when he says:
"A second way to think about, and live within, limits is called the Fifty Percent Solution, described by William Collinge....Rather than challenging your limits, you keep your activity to a safe level. The unexpended energy is a gift of healing that you give your body. Collinge's idea is a clever way of addressing our tendency to overestimate what we can accomplish. Another benefit is that it gives you permission to take care of yourself."
I feel the wisdom and the absolutely sane and encouraging tone...And, recent experience tells me it can make a difference, along with sound nutrition and real rest and more.
mostly unrelated note: Listening to Andrea Bocelli puts me in a good relaxed mood as he often straddles the line between serious opera and pop, with a rich, warm, full sound that just makes me feel nice and happy. I turn off my music critic (mostly) and just enjoy it.
I highly recommend that each of you make a list of the things you know are going to create these emotions and physical sensations for you. Use it as a 'first aid kit' and indulge generously!
will hopefully help raise awareness of the condition and it's lack of support amongst our MP's who...
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