A short sad history of ME/CFS

Mojisola

I have had this test done - https://www.drmyhill.co.uk/wiki/Mitochondrial_Function_Profile

Read the information on mito failure - https://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

As NEH says, tests like this show that there is something physically wrong with the body. It's much harder for other people - doctors/benefit agency/family/friends - to say there is nothing wrong with you when you have objective tests to show them. There are also ways to improve your mito function so you can improve your health - if you can afford it. The NHS won't fund the tests or the supplements needed to correct any problems found.

Lemony

NEH wrote: »

It doesn't diagnose Fibromyalgia/ME, i never said that. It's a blood test that has shown an abnormal result for me that fits in with my history and proves that what has been wrong with me is true....

Sorry, I misunderstood you. I have also had abnormalities in my blood tests which 'prove' there is something wrong with me. I have auto-immune antibodies which means a disease process has occured, but they can't decide what and just keep an eye on me!

NEH

prettypeach wrote: »

The blood test that seems to prove something is the mitochondrial function one.
There's something about mitochondrial cells and the heart. They are cells that are to do with energy production I think, and the hearts of M.E. patients, so the theory goes, function below par in some way.
There's loads about the mitochondria test(s) on the net.
Unfortunately they're expensive, I've got a diagnosis already but would still like to get these tests myself, wish I could afford them.

It wasn't a huge amount...I have never heard about the heart bit, to me it has always been explained that the mitochondrial cells and the connection with the brain, never the heart...

CJN4 wrote: »

Hi,

Would be really helpful if you could remember the actual blood test.

Thanks

If you pm i'll tell you but i didn't want to put it on here as epxlianed before as it's only something that's worked for me. We are all different with this illness and i would not want to get ones hopes up.

Mojisola wrote: »

I have had this test done - www.drmyhill.co.uk/wiki/Mitochondrial_Function_Profile

Read the information on mito failure - www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

As NEH says, tests like this show that there is something physically wrong with the body. It's much harder for other people - doctors/benefit agency/family/friends - to say there is nothing wrong with you when you have objective tests to show them. There are also ways to improve your mito function so you can improve your health - if you can afford it. The NHS won't fund the tests or the supplements needed to correct any problems found.

Thanks, put it better than i ever could! :rotfl:

Even though mine is double what it should be they don't actually do that much about it, it's not about treatment or gearing it because of the results of these tests it's just to show something is wrong. I am trying a new drug that is still in it's infancy but plenty of MS, Fibromyalgia and ME patients are trying it even though the NHS refuse to back it....The side effects are however for me pretty awful but we're hoping they will calm down in the future....Unfortuantely there is no treatment for conditions such as this you jsut have to soemtimes try things in the little hope that they will provide some relief, albeit little....In the 17 years i have had first ME and then Fibromyalgia the medical profession hasn't moved on that much except for those indivduals willing to sacrifice their reputation and do something about it but in order to do this they must charge for the high price they pay personally.

mardatha

The NHS would much rather decide its all in the imagination - because then they dont have to bother funding research, or pay out any Incapacity benefits. I never had the money to go to Dr Myhill or any of the others, but I did also have reservations about anybody who charged such a lot of money.
What worked for me - didnt make me well but made me a lot better than I was, was diet. I was on the sofa for 2 years, just like I had flu. I am now a lot better but still get exhausted very easily. I changed to a very simple old fashioned diet. Porridge, home-made soups, home-grown veg, and no pkt mixes of any kind, no ice creams or desserts. It kills me because I have a very sweet tooth !! so I cheat now & again but I find now that when I cheat, I get tireder. So now I only cheat when I would kill somebody if I didnt get some chocolate

Mojisola

Dr Myhill gives away a lot of her knowledge. She always asks people to start with her free book (£12 if you want them to send you a paper copy) - https://www.drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill

She's not keen on you paying for tests and prescribed medicines until you've tried the protocol in the book as it resolves some problems.

NEH

mardatha wrote: »

The NHS would much rather decide its all in the imagination - because then they dont have to bother funding research, or pay out any Incapacity benefits. I never had the money to go to Dr Myhill or any of the others, but I did also have reservations about anybody who charged such a lot of money.
What worked for me - didnt make me well but made me a lot better than I was, was diet. I was on the sofa for 2 years, just like I had flu. I am now a lot better but still get exhausted very easily. I changed to a very simple old fashioned diet. Porridge, home-made soups, home-grown veg, and no pkt mixes of any kind, no ice creams or desserts. It kills me because I have a very sweet tooth !! so I cheat now & again but I find now that when I cheat, I get tireder. So now I only cheat when I would kill somebody if I didnt get some chocolate

Thats what i have never understood because psychiartric care is vastly expensive and in very short supply so i can't understand why they want to go down this route and never have..

Mojisola wrote: »

Dr Myhill gives away a lot of her knowledge. She always asks people to start with her free book (£12 if you want them to send you a paper copy) - www.drmyhill.co.uk/wiki/CFS_-_CFS_Book_published_by_Dr_Sarah_Myhill

She's not keen on you paying for tests and prescribed medicines until you've tried the protocol in the book as it resolves some problems.

Well i'm not keen on paying for tests either and i am hoping that i won't be this time as i am waiting for an old insurance thing to cover it as i certainly do't have the money with not being able to work.


I never thought i would say this but i think looking at it from a doctors point of view if i were to investigate a controversial illness i would be slated by my fellow workers and outcast. I would have to fund all my research myself, i think if i were them i would want something to compensate me for my long hours, lost of professional reputation and all the reasearch i have had to carry out....

I don't like paying for treatment but at the end of the day if something was to make to make me feel that little bit better, even a tiny amount of relief i would steal money from the food budget to pay for it....

prettypeach_2

NEH wrote: »

It wasn't a huge amount...I have never heard about the heart bit, to me it has always been explained that the mitochondrial cells and the connection with the brain, never the heart...



If you pm i'll tell you but i didn't want to put it on here as epxlianed before as it's only something that's worked for me. We are all different with this illness and i would not want to get ones hopes up.



Thanks, put it better than i ever could! :rotfl:

Even though mine is double what it should be they don't actually do that much about it, it's not about treatment or gearing it because of the results of these tests it's just to show something is wrong. I am trying a new drug that is still in it's infancy but plenty of MS, Fibromyalgia and ME patients are trying it even though the NHS refuse to back it....The side effects are however for me pretty awful but we're hoping they will calm down in the future....Unfortuantely there is no treatment for conditions such as this you jsut have to soemtimes try things in the little hope that they will provide some relief, albeit little....In the 17 years i have had first ME and then Fibromyalgia the medical profession hasn't moved on that much except for those indivduals willing to sacrifice their reputation and do something about it but in order to do this they must charge for the high price they pay personally.

I've only ever heard of the mitochondrial thing in relation to the heart..
http://www.care2.com/news/member/956805373/589069
From a quick look at Sarah Myhill's site and another one, to get the full range of mitochondrial tests costs hundreds of pounds.
Then there's the charge for letter to GPs etc. It's a lot of money for me, especially at the moment.
Just frustrating because the formal diagnosis doesn't seem to satisfy some GPs, would be nice to have some test results to wave under their noses.

NEH

prettypeach wrote: »

I've only ever heard of the mitochondrial thing in relation to the heart..
http://www.care2.com/news/member/956805373/589069
From a quick look at Sarah Myhill's site and another one, to get the full range of mitochondrial tests costs hundreds of pounds.
Then there's the charge for letter to GPs etc. It's a lot of money for me, especially at the moment.
Just frustrating because the formal diagnosis doesn't seem to satisfy some GPs, would be nice to have some test results to wave under their noses.

Mine cost less than £100....and like you i couldn't have afforded it, an insurance policy says they would pay out but my mum has had to lend me the money in the meantime...


I think your thinking of that reasearch that came out that says that CFS is a mild form of heart failure and that mitochondrial thing...

It says something about all ME patients have some altered cardiac output...well i must be the exception when i used to have it. :rotfl:

prettypeach_2

Actually, it appears that the test you said you had is to do with measuring cell damage and inflammation, rather than the mitochondrial profile which is to do with cell energy output (sorry, I might have wrongly assumed you'd meant the mito one as I've not read all the posts here not really up to it at the mo):

http://www.google.co.uk/search?hl=en&client=firefox-a&hs=QOk&rls=org.mozilla%3Aen-GB%3Aofficial&q=cfs+nitrotyrosine+test&btnG=Search&aq=f&aqi=&aql=&oq=&gs_rfai=

That might explain why it was relatively cheap - I've never heard of that test til now and had no idea that kind of test was employed to detect M.E., although it seems from a quick look at the above article, to make sense as M.E. may well involve neuro damage as MS does.

NEH

prettypeach wrote: »

Actually, it appears that the test you said you had is to do with measuring cell damage and inflammation, rather than the mitochondrial profile which is to do with cell energy output (sorry, I might have wrongly assumed you'd meant the mito one as I've not read all the posts here not really up to it at the mo):

http://www.google.co.uk/search?hl=en&client=firefox-a&hs=QOk&rls=org.mozilla%3Aen-GB%3Aofficial&q=cfs+nitrotyrosine+test&btnG=Search&aq=f&aqi=&aql=&oq=&gs_rfai=

That might explain why it was relatively cheap - I've never heard of that test til now and had no idea that kind of test was employed to detect M.E., although it seems from a quick look at the above article, to make sense as M.E. may well involve neuro damage as MS does.

It's not used to detect ME, mentioned in the post above (but i understand when you're not with it and it's like pea soup )


I have Fibromyalgia now instead of ME and i think it's just used a general indicator rather than a diagnosis tool....There is no test that is used to diagnose either condition really except for the tender point test in Fibro and ruling everything else out for ME...