We’d like to remind Forumites to please avoid political debate on the Forum.

This is to keep it a safe and useful space for MoneySaving discussions. Threads that are – or become – political in nature may be removed in line with the Forum’s rules. Thank you for your understanding.

📨 Have you signed up to the Forum's new Email Digest yet? Get a selection of trending threads sent straight to your inbox daily, weekly or monthly!

A short sad history of ME/CFS

145791027

Comments

  • Trialia
    Trialia Posts: 1,108 Forumite
    NEH wrote: »
    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...

    That doesn't impact on my daily life one bit, and in the medical field, that's actually old news now. England is pretty far behind when it comes to FM, even though I remember reading it's the second or third most common diagnosis NHS rheumatologists make.
    Homosexual, Unitarian, young, British, female, disabled. Do you need more?
  • NEH
    NEH Posts: 2,464 Forumite
    edited 2 August 2010 at 12:59PM
    Trialia wrote: »
    That doesn't impact on my daily life one bit, and in the medical field, that's actually old news now. England is pretty far behind when it comes to FM, even though I remember reading it's the second or third most common diagnosis NHS rheumatologists make.


    Well there are people working on that research as a basis and coming up with ideas and suggestions, some of the studies based on your old news were only carried out in the last couple of years. You're never going to find a cure in the next future generations, sadly that's something you have to come to accept....:( To me having that it is a neuro immune disease provides me with some comfort as opposed to it's one of those illnesses...That's a huge step forward in my book.

    I honestly think ME is more behind Fibromyalgia as Fibromyalgia has been recognised for a lot longer...When i had ME for example i wouldn't have been able to have a mortgage but now having Fibromyalgia i can....

    I think you also mean Britain is further behind America rather than just England ;)
  • Trialia
    Trialia Posts: 1,108 Forumite
    NEH wrote: »
    I honestly think ME is more behind Fibromyalgia as Fibromyalgia has been recognised for a lot longer...When i had ME for example i wouldn't have been able to have a mortgage but now having Fibromyalgia i can....
    I honestly don't believe so. Hardly anyone I meet has any idea what FM even is if the subject comes up, I'm forever having to explain and I hate it. Even though they seem to have heard of ME pretty well...
    I think you also mean Britain is further behind America rather than just England ;)
    No, I don't. It's true about England, Scotland, Wales and Northern Ireland, but the NHS has separate administrative sections and research for most of the countries of the so-called "United Kingdom" and I have no idea how far Eire are in their research, so no, I meant exactly what I said. Please don't try to tell me what I mean and do not mean; I choose my words very carefully.
    Homosexual, Unitarian, young, British, female, disabled. Do you need more?
  • mardatha
    mardatha Posts: 15,612 Forumite
    With so little energy at the best of times, dont let's waste it on bickering! Who cares what illness is better/worse or more famous ? We just want to GET BETTER !
  • NEH
    NEH Posts: 2,464 Forumite
    mardatha wrote: »
    With so little energy at the best of times, dont let's waste it on bickering! Who cares what illness is better/worse or more famous ? We just want to GET BETTER !

    Marthda I wasn't bickering, i have had this illness far too long to argue over it...;) which is why i won't jump u and down when people say it's all in the mind or whatever, i jsut stand back and let them now, you will never alter what some people think....

    I think that people may be aware of ME but they have no idea of the real symptoms...My specialist thinks they're all one and the same really anyway...

    Trialia i am sorry my words have caused you to be upset, they were not mean't to be...We have an awful lot of peeps refer to the United Kingdom as England when it isn't....
  • HellsGranny
    HellsGranny Posts: 308 Forumite
    Part of the Furniture 100 Posts Combo Breaker
    I have recently been diagnosed with Fibromyalgia after suffering symptoms which could have been either Fibro or ME for many years.

    I had to start using a stick 2 years ago, since when the condition has progressed rapidly to the point where I am almost housebound, have great difficulty in walking, and have had to give up every activity which makes my life worthwhile. (I used to be very active, dancing, walking, horseriding, fencing and archery).

    Now the pain and stiffness is such that I have to keep moving or else I seize up! I am also getting muscle weakness, which is making cooking difficult (hot pans and kettles, combined with weakened wrists don't mix well). I also find that on a day when I feel good, I attempt housework which I cannot attempt on bad days, resulting in me getting wiped out, energy wise, for several days!

    I can't seem to get the hang of the advice to 'pace myself', the little I do is insufficient to keep on top of even basic housework, and I am not houseproud!

    I'm wondering if there is an element of ME in my condition, as others I know with Fibro get on far better than I do! I'm so frustrated that I am getting worse and very little is being done! (My Rheumy is a lovely person, he has also discovered that I have low Vit. D levels, and he has also referred me to a Cardiologist for possible angina, as I had Rheumatic Fever as a child).

    Sorry, I'm ranting, I'll stop now.
  • Mojisola
    Mojisola Posts: 35,571 Forumite
    Part of the Furniture 10,000 Posts Name Dropper
    MrsManda wrote: »
    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?

    Does this - https://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure - explain the problem?
  • NEH
    NEH Posts: 2,464 Forumite
    I have recently been diagnosed with Fibromyalgia after suffering symptoms which could have been either Fibro or ME for many years.

    I had to start using a stick 2 years ago, since when the condition has progressed rapidly to the point where I am almost housebound, have great difficulty in walking, and have had to give up every activity which makes my life worthwhile. (I used to be very active, dancing, walking, horseriding, fencing and archery).

    Now the pain and stiffness is such that I have to keep moving or else I seize up! I am also getting muscle weakness, which is making cooking difficult (hot pans and kettles, combined with weakened wrists don't mix well). I also find that on a day when I feel good, I attempt housework which I cannot attempt on bad days, resulting in me getting wiped out, energy wise, for several days!

    I can't seem to get the hang of the advice to 'pace myself', the little I do is insufficient to keep on top of even basic housework, and I am not houseproud!

    I'm wondering if there is an element of ME in my condition, as others I know with Fibro get on far better than I do! I'm so frustrated that I am getting worse and very little is being done! (My Rheumy is a lovely person, he has also discovered that I have low Vit. D levels, and he has also referred me to a Cardiologist for possible angina, as I had Rheumatic Fever as a child).

    Sorry, I'm ranting, I'll stop now.

    Sorry to hear that...

    Pacing in itself can take years to really get the hang of it and even now I find it hard to stop myself...It may be that your friends with Fibro may be in the remission phase of the illness and can manage more....When I am in that remission phase I can work part time etc...

    If i'm in a relapse phase then pacing just doesn't cover it.....Like housework has to go on the backburner, i have created some real Mount Everest piles of ironing in my time :rotfl:

    I wish i could recommend something to help but sadly there isn't much out there...I am in about my 8/9th very bad relapse in 17 years (maybe more i have lost count) and i am currently trying an experiemental treatment just to see if i can get some ease from the symptoms...
  • Mojisola
    Mojisola Posts: 35,571 Forumite
    Part of the Furniture 10,000 Posts Name Dropper
    I can't seem to get the hang of the advice to 'pace myself', the little I do is insufficient to keep on top of even basic housework, and I am not houseproud!

    Pacing is quite hard for most people to do at first. It just feels so wrong sitting around when there is work to do!

    You have to ignore the work that needs to be done. The amount you can do is dependent on your energy for the day - that's the only thing you can take into account. If you think of energy like money, your aim is to stay in the black - if you have £10's worth of energy and spend £11 doing jobs, you're in trouble. In fact, to allow for unexpected expediture of energy, you should aim to only spend £9 out of your £10 every day. That way your body has a bit in reserve which it can use to start healing the problem. That's even harder - sitting down while you still feel you could manage to do one more job!

    There are a few little tricks which can help. One is to limit how long you do something for, eg do something for 15 minutes and then sit down for 15 minutes - the actual minutes depend on how well/ill you are. Most people find they can do more without being exhausted by alternating work/rest periods. Another is not to do the same job for too long. For instance, most people find it less tiring to hoover for 10 minutes and then iron for 10 minutes than to do either job for 20 minutes. It can feel quite frustrating, flitting from job to job, but the work does get done that way.

    Hope that helps.
  • NEH
    NEH Posts: 2,464 Forumite
    I found this article interesting as it explains very well hwo we have to manage our daily activities...

    http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
This discussion has been closed.
Meet your Ambassadors

🚀 Getting Started

Hi new member!

Our Getting Started Guide will help you get the most out of the Forum

Categories

  • All Categories
  • 352.1K Banking & Borrowing
  • 253.5K Reduce Debt & Boost Income
  • 454.2K Spending & Discounts
  • 245.1K Work, Benefits & Business
  • 600.7K Mortgages, Homes & Bills
  • 177.4K Life & Family
  • 258.9K Travel & Transport
  • 1.5M Hobbies & Leisure
  • 16.2K Discuss & Feedback
  • 37.6K Read-Only Boards

Is this how you want to be seen?

We see you are using a default avatar. It takes only a few seconds to pick a picture.