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yes, no, maybe?
Do you think we all will be healthy one time?
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Eyes on the road
Your simple sentence really got to me. I am so sad to hear that. Me too, I awoke in agony as I made the mistake of not taking my tabs last night, Thought I could get away with it. What is it about the mornings that are so bad? Is it being immobile all night that makes everything hurt so much?
When I rang work to talk about returning i couldn't talk I was so upset. After taking the tabs I picked up a bit but had to sit down after each short chore. Fill the washing machine, sit down, hang out the clothes, sit down. I feel like an old lady but hope to god this isn't what old age feels like.
But I do feel hope, little things make a difference. A friend with M.E. went to see a very well known herbalist who spent two hours talking to her for the same price as a five minute doctor visit. she took a full history and said she would be treating her for a virus, and no her symptoms are not bizarre, she hears it a lot. it's FM/ME. She said its a virus, pure and simple.
I've been reading another thread from a poster who says people must not hang too much on XMRV, and I respect that. What decent person would want a bunch of people who have lived like this to be let down again? I was thinking about why the XMRV resonated so much with PWME and I do think it's not just wishful thinking. I think it's instinctive, it FEELS like a virus, it fits the description, it makes sense. Hang in there, it's a long road I know, but I have faith, I'm a cynic and I still have faith.
Hi Diesel,
Your simple sentence really got to me. I am so sad to hear that. Me too, I awoke in agony as I made the mistake of not taking my tabs last night, Thought I could get away with it. What is it about the mornings that are so bad? Is it being immobile all night that makes everything hurt so much?
When I rang work to talk about returning i couldn't talk I was so upset. After taking the tabs I picked up a bit but had to sit down after each short chore. Fill the washing machine, sit down, hang out the clothes, sit down. I feel like an old lady but hope to god this isn't what old age feels like.
But I do feel hope, little things make a difference. A friend with M.E. went to see a very well known herbalist who spent two hours talking to her for the same price as a five minute doctor visit. she took a full history and said she would be treating her for a virus, and no her symptoms are not bizarre, she hears it a lot. it's FM/ME. She said its a virus, pure and simple.
I've been reading another thread from a poster who says people must not hang too much on XMRV, and I respect that. What decent person would want a bunch of people who have lived like this to be let down again? I was thinking about why the XMRV resonated so much with PWME and I do think it's not just wishful thinking. I think it's instinctive, it FEELS like a virus, it fits the description, it makes sense. Hang in there, it's a long road I know, but I have faith, I'm a cynic and I still have faith.
gracenote
All shall be well . . .
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This poll is not private. Maybe a moderator could make it private so our names don't show up?
Tammie
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Well, I marked; "IDK, I have kind of lost all hope", but I have to clarify that I do still have hope - just not so much re getting better
....I have hope in eternity, most importantly, but I also have hope that some day there will be some sort of cure or at least better treatment.....I did not mark the other response, though, bc I do think it will still be a long time coming, & though I don't think it will be too late ( as in many of us will already be dead), I do think that it may be too late for those of us who have had this long enough to cause related issues
.....in other words, I interpreted the too late answer to mean too late bc we are gone (although it may not have been intended to mean that).....I think that if we have had heart complications, or damage to our CNS, or damage to other organs, etc, that may be irreversible and so even if the ME/CFS can be treated, the other issues will remain
....I have hope in eternity, most importantly, but I also have hope that some day there will be some sort of cure or at least better treatment.....I did not mark the other response, though, bc I do think it will still be a long time coming, & though I don't think it will be too late ( as in many of us will already be dead), I do think that it may be too late for those of us who have had this long enough to cause related issues
.....in other words, I interpreted the too late answer to mean too late bc we are gone (although it may not have been intended to mean that).....I think that if we have had heart complications, or damage to our CNS, or damage to other organs, etc, that may be irreversible and so even if the ME/CFS can be treated, the other issues will remain
Wonko
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I answered
It will take some more years but yes.
because even if XMRV is conclusively prooved to the be cause of ME tomorrow I live in the UK - and we have the NHS here - it will probably take them 2-5 years to acknowledge it - another 5 years for goverment policy to follow - several years to develop and approve treatments etc. - and then we will be denied treatment because antivirals cost money - and the same old arguements about just how diabiliting ME actually is will be used as an excuse - they do it to cancer (and other) patients here - if it's not immediately life threatening and treament costs above X then it isnt allowed
at some point that will change - ie the price will come down - so maybe 10-15 years before everyone in the UK with ME can get proper diagnosis, treatment etc.
by which time I'll be nearly 60 - what am i then supposed to do with my life? yes i have lots of things i would like to do that i currently cant - but they hardly consitute a LIFE
if they dont get a damn move on I'll have to scratch tiger wrestling off my list of things to do before i expire (possibly just before lol) - as they seem likely to go extinct before I'm well enough to get round to it lol
and thats if XMRV is both proved and accepted to be the cause tomorrow...maybe I selected the wrong box?
It will take some more years but yes.
because even if XMRV is conclusively prooved to the be cause of ME tomorrow I live in the UK - and we have the NHS here - it will probably take them 2-5 years to acknowledge it - another 5 years for goverment policy to follow - several years to develop and approve treatments etc. - and then we will be denied treatment because antivirals cost money - and the same old arguements about just how diabiliting ME actually is will be used as an excuse - they do it to cancer (and other) patients here - if it's not immediately life threatening and treament costs above X then it isnt allowed
at some point that will change - ie the price will come down - so maybe 10-15 years before everyone in the UK with ME can get proper diagnosis, treatment etc.
by which time I'll be nearly 60 - what am i then supposed to do with my life? yes i have lots of things i would like to do that i currently cant - but they hardly consitute a LIFE
if they dont get a damn move on I'll have to scratch tiger wrestling off my list of things to do before i expire (possibly just before lol) - as they seem likely to go extinct before I'm well enough to get round to it lol
and thats if XMRV is both proved and accepted to be the cause tomorrow...maybe I selected the wrong box?
ixchelkali
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Didn't respond because none of the choices fit me. I guess I would say "I don't know, but I haven't given up all hope."
I think probably that for some of us who have been sick for a long time, there may be some irreversible damage, so that we may get better, but not 100% well. But heck, if I could get back to 70% well, I'd be ecstatic.
I think probably that for some of us who have been sick for a long time, there may be some irreversible damage, so that we may get better, but not 100% well. But heck, if I could get back to 70% well, I'd be ecstatic.
I have neurological damage, possibly cardiac damage too which will not be restored by treating any of the causes of ME. It is the same with MS. A cure would stop deterioration but is unlikely to repair damage that has already been done.
I do think that the outlook is much better for those who have not been ill so long.
I agree with ixchelkali, though. Any improvement is worth it. Even if I could just have a shower and dress myself I would be ecstatic and I hope that some day I will be able to get into the garden again, maybe even plant up a few pots of herbs.
Mithriel
I do think that the outlook is much better for those who have not been ill so long.
I agree with ixchelkali, though. Any improvement is worth it. Even if I could just have a shower and dress myself I would be ecstatic and I hope that some day I will be able to get into the garden again, maybe even plant up a few pots of herbs.
Mithriel
I think there is hope for the future, but not for me as I am 58 now and have been severely affected for 23 years;says the damage to our bodies of going without treatment for years cannot be rectified.
Just being believed by the UK medical profession instead of treated like a piece of malingering scum would make my life so much more bearable.
Just being believed by the UK medical profession instead of treated like a piece of malingering scum would make my life so much more bearable.
I know several people who have completely recovered (all by different means, different tests, different treatments) -- and one was sick for 16 years, the other for 17 -- but still, there are those 'terrible days' (or weeks/months) when I feel so hopeless, and tend to wonder the same thing, even think about giving up.
But when they do get bad I try to remember the 'better' days that occur from time to time. If they've happened before, they'll happen again.
Sallysblooms
P.O.T.S. now SO MUCH BETTER!
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I think our bodies are amazing and can repair if we give them the food, water and supplements they need. SLEEP too of course. The human body wants to be well and it is not always possible, but I remain hopeful.
There is a big difference between pessimism and acceptance and it is important to distinguish them.
I have nerve and brain damage and that is not going to be fixed. I also have the consequences of decades of ill health, lack of exercise and weight gain. On the plus side it has meant I have never had sun damaged skin, smoked or drank too much and being in a wheelchair means I haven't got wear and tear issues in my legs and hips Yay!
Hoping for some improvement is one thing, but I found that living in hope of returning to normal health meant I put off getting as much as I could out of the life I had today.
Hoping for good health can become like hoping for that lottery win, it just stops you dealing with the actual possibilities of your life. We need to aim for a clear look at reality
Mithriel
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i couldn't vote either....
i believe all m.e. is curable as are most illnesses that are thought not to be...not only back to 100% but even more healthy than you were before or than the average joe blogs. i don't say this out of hope but from what to me is knowing. getting ill is not psychological but recovery is imo, i.e. whether you can sift through the treatments, sort the chaff out as it were, remain focussed, not be drawn by medical conclusions...all this is within anyones grasp, even mine! not easy tho. it takes an enormous amount oif energy just to breathe and pump blood round your body all day, "just" a case of redirecting that energy through the blocks and to do the repair...i don't think there will ever be a "cure"...by that i mean pharmaceutical take a pill type thing...tho thats been flogged and will remain to be so...natural is the only way in my opinion...i would agree that the longer your illness goes on the trickier recovery becomes, but is still very possible...
i believe all m.e. is curable as are most illnesses that are thought not to be...not only back to 100% but even more healthy than you were before or than the average joe blogs. i don't say this out of hope but from what to me is knowing. getting ill is not psychological but recovery is imo, i.e. whether you can sift through the treatments, sort the chaff out as it were, remain focussed, not be drawn by medical conclusions...all this is within anyones grasp, even mine! not easy tho. it takes an enormous amount oif energy just to breathe and pump blood round your body all day, "just" a case of redirecting that energy through the blocks and to do the repair...i don't think there will ever be a "cure"...by that i mean pharmaceutical take a pill type thing...tho thats been flogged and will remain to be so...natural is the only way in my opinion...i would agree that the longer your illness goes on the trickier recovery becomes, but is still very possible...