I wonder if they have a better grip over there of chronic viruses like EBV or HHV6 which are often the cause of ME/chronic fatigue and consequently use antivirals. Jane x
Or maybe he took some time out in a quieter country and in fresh air to simply allow his body to start to sort itself out?
I so wish I had the money and support to be able to take time out and just rest. I think I'm heading for burnout, not from a demanding job these days (that is oh so in the past!) but from dealing with ill health, the NHS and having to make constant decisions on what to do each day with my limited time - all while watching my home and relationships decay as there is not enough energy to go round.
Hear, hear to more well known people speaking out if they are ill rather than giving the impression that they are and we should be superhuman. It says so much about the shame surrounding these illnesses that more don't.
Hi Sandi, I know exactly how you feel. I,ve lived with mild/mod CFS since 1996, I had to give up a very well paid career because of it. Then in 2001 I was diag with an underactive thyroid, in 2006 High Blood Cholesterol. Recently been told my Kidneys are slightly damaged (found out this is because of the meds I take for my Cholesterol),I am just turned 60, but feel like a very old person most days - its awful. The only way I can describe my tiredness, is like someone has just switched off the light, so know how you feel. You sound alot younger than me though, so you have my sympathy. I have learned to live with my ailments, and do get times when I feel hunky dorey, but whereas I was getting say 4/5 weeks at a time, now im lucky to get 4/5 days, but perhaps that,s my age as well. I do hope you feel better soon, and I agree, if there were more Celebs speaking out, perhaps more research would be done.
When I became poorly in the early nineties, they did check me for everything under the sun, before diagnosing my ME/CFS in 96. I new someone at the time who was also diagnosed with ME, and I have to admit I was horrified, as he was wheelchair bound. I on the other hand just had the extreme fatique. I was quite sickly as a child, having tonsilites practically every other week in the winter months,and I had wires put down my nostrils into my throat for about 2 years when I was 15, my tonsils were removed when I was 21. ME/CFS I know, is linked to your immune system, so perhaps all that happened in my younger years may have contributed to my ME/CFS. I was diagnosed at the age of 43. Do I think it was an accurate diagnosis, yes I do, as I have the brain fogging that is also associated with ME/CFS. Kind regards, Kath
I sound young - whoopee! But am only just behind you.
It sounds like you have a similar path to mine. Hypo diagnosed five years after having to leave my career due to CFS - and I'm just gradually getting fewer good days when I can do any brain work or drive, recovery time too getting longer. Like the light is gradually being turned off.
I'm not sure I've really accepted it all, am still sad over all I've lost and all I can no longer do that I so would like to do.
It is truly upsetting Sandi, I know, as I have friends my age that ive known all my life.... who do actually have a life!. I try to convince myself that my age has something to do with my ailments, but when I see what they fit into their lives, I know this is not the case. But what can we do......as you say just dream things will get better. Take care of yourself. Kath x
Sandi, that's the exact word I use, feel my body is on burnout, I worry how long it can continue with this last 2yrs feel like almost total collapse but I'm fighting it all the way.
I agree with you. It would be great if more people spoke out. I notice he hasn't spoken out for years. It was just like that at my job. If I had ever given that as an excuse for being off work, I would never have got another job. As it was I lost mine in the end anyway.
Check out the guptaprogramme.com - amygdala retraining and see what you think - I think it's like the lightning process by another name and i'm not convinced - the whole Harley Street thing is also very scammy - anyone can set up to have a consultancy there nowadays, they hire out rooms to any practitioner for consultancy - The Optimum Health Clinic did that too, a similar kind of scheme. I'll bet the registered business address ISN'T actually Harley Street.
If you look at the 'contacts' on the website for individual practitioners they mention working through emotional issues and hypersensitivity - i.e. it's mental based stuff that's causing your physical problems. There's obviously a link yes but whether that's all it's cracked up to be???
I paid a lot for one of these kind of 'retraining' programmes a few years back and it didn't help. It all depends what the ACTUAL CAUSE of your 'CFS' is. I don't believe ME is synonymous with CFS.
Stormylove l doubt it was on her records. Nearly impossible to be taken seriously in my exp. with M.E. l've been ill for 21 years, but didn't get diagnosed until l fell pregnant 7 years ago. Despite a massive report from the M.E. place in Romford, all it says on my notes is 'Chronic Fatigue episode during pregnancy' FFS
Your poor son. I hope he's much better now. Hope you got them to test for adrenal insufficiency if they suspected it - amazed but maybe whatever computer programme the operator was using comes from somewhere where they recognise it!
I wonder if warmer climates help, I know I feel slightly more energetic when the sun shines and it has taken a hell of a long time to get here this year. When my partner and I were first married in 1973 I wanted to emigrate to Australia, we never got there, he didn't want to do it. I often wonder if we had, would I have developed Hypothyroidism, and even indeed would he still be alive now having died of bowel cancer 17 months ago. An outdoor active lifestyle all year round has to be more beneficial for anyones health.
Hi - the New Zealand ME Association has a very developed base and back in the 90ties Dr Leslie Simpson came to talk to the local ME Support Group my husband and I used to run. He was on one of his regular overseas tours and spoke so convincingly of his convictions regarding the composition of the blood of ME sufferers compared to 'normal' samples. He has written a book called 'Blood Viscosity Factors' and particularly recommended at the time solutions which raise the oxygen carrying potential of red blood corpuscles. One of his favourite remedies is Evening Primrose Oil.
This is interesting. The one very abnormal blood test I've had was for IgM which in my case was something like 15 times higher than norm. They said it would just make blood sticky (think that might be more viscous?) but have otherwise continually ignored it.
Will see if I can chase this book/ more info. Thanks.
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