A short sad history of ME/CFS

clouty

Welshwoofs, I'm so glad that you have got back into the swing of things, with the help of Dr. Myhill. Have you checked her web site lately? The fight with the GMC continues.

Both Welshwoofs and Vivatifosi have climbed out of the ME hole, that so many are stuck in (including me), and I hope they won't mind me pointing out that they were able to pay for private testing and treatment. If you have to rely on the NHS, often after a long period of decline, it seems that the powers that be want to support us on ESA and DLA and HB and CBT (that's council tax benefit, not cog. behav. ther. ) in our sickness, rather than bite the bullet to start with, find out what is truly wrong, and fix it, if possible, and it often is. Instead of encouraging the few doctors that understand this disease, and training more, they persecute them.

Short sighted thinking, indeed.

MrsManda

Hi, I don't know much about M.E. from a medical point of view but I've got close friends with this condition. I was interested to read the comments about Mitochondria function tests being a possible diagnositc tool for M.E. as I didn't think that M.E. was an inheritable condition. Does it run down the mother's line? I.e. if your mum has M.E. due to damaged mitochondria, you will have it as well?

GEEGEE8

I was diagnosed with Chronic Fatigue after a bad case of Glandular Fever when I was about 14. It made me feel very 'lazy' for years afterwards.. Luckily I seem to be rid of it I think. Although after a long journey or day I'm ready to drop, this could be down to being overweight though.

I do still feel more tired than a 'normal' person..

Hope you all get the help you need. I was told I had it and nothing was done at all.

Someone mentioned balance? Is this related? I am always bumping into things, but I also have good balance as I snowboard.. so I don't know..

NEH

I have suffered from ME and was rediagnosed as having Fibromyalgia 5 years ago...

Through the 17 years i have had both, i have experienced some understanding but mainly misunderstandings and I am amazed that in 17 years how very little we have moved forward with either of these conditions. I was shocked to still find GP's when i moved that still believed it was "one of those illness" and that quote ie straight from the horses mouth so to speak...

The only positive i find now is that my Fibromyalgia is now classed as a neuro immune disorder which to me is a far more concrete classfication than that that has gone before and if you get a good specialist to explain it it makes complete sense...

mardatha

I got better than I was- but only when I stopped fighting it. That took me two years. Then I gave up, and hit the couch for a year. In that year, I must have got enough rest - physical and mental - and got a bit better. But its like I have no battery back-up, I have to eke out what energy I have and not let it run out. Its so bloody annoying to a person like me who was always into everything ! LOL

mardatha

Also, forgot to say - when I had all the blood tests done, my gp found glandualr fever antibodies. I didnt know I had ever had GF. But she said that every person with ME has these antibodies - so there is a link to glandular fever but they don't yet know what it is. It makes it seem better if there is a concrete illness though doesn't it?!

Trialia

mardatha wrote: »

Also, forgot to say - when I had all the blood tests done, my gp found glandualr fever antibodies. I didnt know I had ever had GF. But she said that every person with ME has these antibodies - so there is a link to glandular fever but they don't yet know what it is. It makes it seem better if there is a concrete illness though doesn't it?!

I'm glad to see progress being made in M.E. - wish they could do the same for fibromyalgia.

Mojisola

MrsManda wrote: »

Hi, I don't know much about M.E. from a medical point of view but I've got close friends with this condition. I was interested to read the comments about Mitochondria function tests being a possible diagnositc tool for M.E. as I didn't think that M.E. was an inheritable condition. Does it run down the mother's line? I.e. if your mum has M.E. due to damaged mitochondria, you will have it as well?

There is a correlation between mothers with ME and children with ME.
As with some other diseases, significantly more females than males get it. Anyone who has any first degree relative with ME also has a higher chance of getting it.

NEH

Trialia wrote: »

I'm glad to see progress being made in M.E. - wish they could do the same for fibromyalgia.

They have, read my post above, they are now refering to it as a neuro immune disease which is a lot more concrete and more reasearch is being done, admittedly a fair bit in America but research none the less...

MrsManda

Mojisola wrote: »

There is a correlation between mothers with ME and children with ME. As with some other diseases, significantly more females than males get it. Anyone who has any first degree relative with ME also has a higher chance of getting it.

Thanks. The reason I ask is that if M.E. is due to mitochondria damage then there is likely to be damage to the mitochondrial DNA (as presumably if you can diagnose by testing mitochondrial function then the damage must be in every cell?). If there is damage to the mitochondrial DNA then any children will also have damaged mitochondria and thus surely should also have M.E.? If there isn't this correlation mitochondrial damage cannot be a concrete diagnositc factor as presumably you can have damage without M.E.?
Or is there no damage to the mitochondrial DNA?