Letters

Letters: Biomedical Research into ME/CFS

envelopeDear Orkney News,

Many of your readers will know at least one of the 250,000 children and adults in the UK with myalgic encephalomyelitis (M.E.), also diagnosed as chronic fatigue syndrome (CFS, or M.E./CFS) – though they may not see the devastating toll this serious neurological condition can take.

A lack of research means that we don’t yet know the cause, or have an effective treatment – but a large, planned genetic study could change that.

With scientists and patients working together, the M.E./CFS Biomedical Partnership is applying for funding to test DNA samples from 20,000 people with M.E.

Readers can show their support for this potentially game-changing biomedical research, and sign-up for updates, at www.mebiomed.org.uk/get-involved

Yours,

Sonya Chowdhury, Chief Executive, Action for M.E.; and Andy Devereux-Cooke, patient and CureME Biobank Steering Group member, on behalf of the M.E. Biomedical Partnership www.mebiomed.org.uk @MEbiomed

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  1. This is what I send to people who ask if I have ME –
    It might be helpful in some way?

    Right then – long story short – Fatigue Syndrome, ME, and a few other things, are much the same thing. What doctors do when they don’t know what a thing is, don’t know what to do about it – they give it a name.
    How I see what happened…….Problem with right eye – far too much strong medication – steroids + all sorts. I reacted badly to them – kept being told they were usual side effects etc. and mustn’t come off the steroids as I’d risk major organ failure (!!!!). They hadn’t thought to tell me that, when they started me on the dratted things! Etc. etc. etc.
    So…..Fatigue Syndrome is a mysterious malaise, but is thought to be caused by a weakened immune system, stress or anxiety, or various other things! Again – I don’t think anyone really knows, as it appears to be caused by different things, and express differently, in each individual. The only warning I was give when I was put on the steroids was – that they would weaken my immune system and to avoid getting infections. I asked, at the time, how I was supposed to do that, apart from living in a cupboard. So…..long story short – weakened immune system, all sorts of problems kicked in – major digestive infection which lasted 2 months. Etc. etc. Crashed – severe (suicidal) depression. Finally – changed to a different surgery, different doctor, not so much medication, different approach – beginning of recovery.
    But ……… I’m left with rubbish eye-sight – fair enough – the problem was with my eye in the first place – I think that can’t be helped. But – also, bad back, random muscle spasms, sometimes excruciating! And…tiredness. If I get too tired, I do go ‘down’ and a lot of physical problems kick in again, and I get into a bad state of mind again too. Been to the doctor – says I’ve been off the medication for a long-time, so it can’t be that. To admit that it was this, would be admitting that a fellow doctor was at fault – something they don’t tend to do. She sent me for a blood test. She sent me for an X-Ray. They both showed nothing, so, apparently – that’s that!
    At the last Royal music night, we were talking with a man, whose wife couldn’t be there, as she has Chronic Fatigue Syndrome. They were on their holidays, and had been out that day, wanted to go out the next day, so she stayed in and rested that evening. Sounded familiar. That’s how I manage my time, too. This man and I were comparing the symptoms of his wife’s CFS with what I experience. Sounded exactly to fit. Mike and I have looked it up – fits exactly. I think I have CFS. It fits. And the possible/probable reason for it, fits too.
    This piece explains it well:-

    http://www.healthline.com/health/chronic-fatigue-syndrome#overview1

    The only place where I disagree with this description, is when they say to consult your physician – which is pointless as they don’t know what to do about it. Also – where they say to pretty much not do things, since you risk going down again. I may be being silly, but I don’t want to live a half-life, if I can help it – so, I go ahead, within reason!, and then pay for it.
    I’m trying to give a brief explanation/description of my experiences, but it’s a big, complicated business. It does kind-of help to at least have an idea of what it is and why. I couldn’t see why I wasn’t improving. Even after a bad illness, it’s usually possible to build your strength up. This is a different matter.
    Also, I’d try to explain to people that the tiredness, isn’t like tiredness, it’s something beyond tiredness, where you can’t function. the man I spoke with at The Royal, was the first person I’ve come across who understood exactly what I meant, as his wife is just the same way.

    I hope to come across someone who gives Healing, as I did. I gave Healing to two people with ME, and the energy flow helped to clear them and put them back on track. One of them has since had a baby! And the other has gone back to being a doctor, which is what he was doing before he got ill. So, some day I might meet a person, or be in place, which will provide me with the Healing I need. Until then, I (mostly) remain – Ever Hopeful!

    Like

  2. PS I should also mention the toll it can take on those around you. As I can’t do as much in the house or garden as I used to, Mike has more to do, and he has to work as well. I can’t say how much I appreciate what he does, and the patience he has about having to do so much.
    Whatever it’s called – ME or Fatigue Syndrome – it messes up your life – only as much as you let it though.
    At first, I used to get in a tiz-waz about not being able to do things, then, we both took on the idea that everything doesn’t HAVE to be pristine in the house or tidy in the garden. As to the rest of life – I manage my time, and that’s how I can do, what I can do. And what we can do, together.
    Managing my time, resting when needed, and trying not to worry too much about NOT doing – that’s how I manage it. And how Mike manages it.
    He deserves a medal. Simple as that.

    Some people understand.
    Some look at me, see my big beamy face and hear me jibber-jabbering away, and think I’m fine. What they see, is when I feel up to going out!

    We never know what other folk are carrying with them – it’s taught me that.

    Like

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