Hey, Barb,
I think many of us have or seem to have mitochondrial disorders (as do our brothers and sisters in fatigue). I think I know why this is happening… It’s next in line for research. I was able to reverse it in myself and my kids. And Barb, lest you doubt if I had extreme fatigue, I was sleeping 20 hours a day, and I WANTED to be asleep the other four! The fatigue was so extreme that I was unable to think, make a to-do list, remember my address, or get out of bed IF THE HOUSE WAS ON FIRE. It goes SO far beyond “fatigue”.
So, if our fatigue’s source is similar, we may be able to reverse this (the medication is by prescription, with a couple of supplements thrown in for the brain fog), and literally, I was BACK in 48 hours. I was afraid my brain had MELTED — and I didn’t think I had much longer. I assumed the changes were permanent. Praise God, I figured it out in time (although my doctor said, “You want me to prescribe WHAT?!”). This clinical trial will take time, because it will need to involve another research center with an IRB (ethics committee) and LOTS of red tape. We may need to get funding, too. Ugh.
It’ll be worth it, though. TRUST ME. 🙂 Diana
Hi Diana,
Oh I certainly believe you! Before my accident, I used to think I was superwoman, always oodles of energy and endurance, busy doing something almost every bit of the day – I couldn’t believe I’d ever be like this.
My energy reserves are so very limited that I have to forfeit many basic-living tasks most people take for granted every day. I feel ashamed that I have to live like this but I have no alternative. For instance, just having a shower drains me of energy, so I only have 2 per week – then promptly fall asleep once my carers gone; getting dressed and undressed uses my vital reserves, so I sleep in my clothes, then I only have to get changed once a day (if I can manage it, as sometimes I don’t even have enough energy for that!).
So, I can’t wait for the treatment trials to begin. As I’m sure you’re all too familiar with, I rely on physical help in everything I do because without that help, I just couldn’t complete even simple tasks. I’m 58 but every day I function like I’m 98! I’ve felt so helpless, frustrated and incensed by it all that I’ve been inspired to write a poem, which I’ll send a link to when I eventually release it.
Since undergoing Dr Sarah Myhill’s ‘mitochondrial function’ tests, I’ve been referred to one of 3 NHS centres here in the UK who specialise in Mitochondrial Dysfunction. The consultant there told me that they are now looking at mitochondrial dysfunction as a cause for Chronic Fatigue (yeah, at last!). So I’ll be bringing the results of your trials to their attention when you publish them, if that’s ok.
Regards
Barbara
(UK)
—————————————————————————————————————-
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!