ME Information

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Me and ME

Me and ME go back a long way; I was first ill during my teens.  A complementary therapist that my family knew diagnosed me with PVF (post viral fatigue) as I’d been ill, almost bedbound, all winter.  I picked up but the following winter I was severely ill again.  The therapist upped my diagnosis to CFS (chronic fatigue syndrome).  I missed nearly two-thirds of my GCSE education because of illness.  After seven years my GP (bless his cotton mismatched socks) finally agreed to refer me to specialist services.  He still holds that it’s a psychosomatic condition but this a great step forward as he started with the belief that it was all made up (trust me, I’ve got better things to do with my life).  The specialist team were surprised that I’d not actually been diagnosed by the GP as all the evidence was fairly conclusive and presumably being diagnosed should prompt the referral, not the other way round!  Since then I have referred to myself as having ME.  I haven’t seen the team for a very long time because there isn’t much they can do or offer.  I’m supposed to be fairly adept at managing myself after all this time.  Pacing was apparently the only thing that they could offer me and is often held to be the most reliable form of ‘treatment’ but the problem is that sometimes life gets in the way!

Some of My Thoughts on ME

In my opinion, ME sucks!  (There you go, that about sums it up).  But seriously, here’s some of my thoughts on the subject.

I still distinguish between three stages or grades of ME.  (edit (07/12):  This could also be seen as three distinct illnesses, see the Hummingbird website).  This is the way I see it:

I think that many people, perhaps even increasingly so, have an episode of PVF after an illness.  Maybe it’s because of our compromised immune systems, maybe it’s because of all the pressures and stresses we’re under, maybe it’s because we don’t take the time to properly recover anymore.  This a short-term issues and with proper management, people make a full recovery.

Sometimes because of a virus or some other trigger, people go on to develop an illness in its own right, CFS.  CFS to me is a fairly short-term problem although debilitating, a person may suffer from a couple of bouts but they can usually go on to make a full recovery.  However some individuals may suffer relapse later in life.

ME is a severe, chronic condition that never leaves a person.  It’s a lifelong illness which continues to affect the individual despite the good patches.  Some individuals suffer a very severe form which is linked to increased deterioration and even death.  Fortunately this is rare.

I also believe that PVF/CFS/ME can be umbrella terms, describing possibly multiple illnesses caused by various triggers and presenting differently in almost every individual.  Whether conditions such as fibromyalgia are also linked under the same umbrella is often debated.  The truth is, I don’t think anyone really knows.

I’m not even going to get started on causes and treatments!  The whole thing is so hotly debated with everyone involved having their own particular preferences and pet theories, and that’s just the professionals.  You’ll find plenty of information about that on the internet if you really want to jump in the mess.

Further Information

Just a few links to some pages that will give you a little bit more information about ME if you’re wondering what it’s all about.  I’m sure they can say it better than I can!

This a quick overview of some of the main symptoms of ME.

This has little more information about ME as does this.

If you’re wondering how badly ME can affect people then here’s some information on degrees of severity and also a wellness scale.

There wasn’t as much information around when I was a teenager but eventually I found this book in the library.  It made sense of so much and explained things very clearly.

Bookcover of Living With ME: The Chronic, Post-viral Fatigue Syndrome by Charles Shepherd (courtesy of Amazon)

Possibly now it’s easier with the internet which can be updated so much quicker with the latest research but if you’ve got the energy and lay your hands on a copy, have a flick through.

Update (07/12):  I am finding that The Hummingbirds’ Foundation for M.E site has the most accurate and reliable information.  I have learnt an awful lot in recent months as I peruse the wealth of information available here, usually needing to look up every other word.  My knowledge and appreciation (although not positive) of this illness has come along in leaps and bounds.  Please visit this site, maybe starting with this overview.

~

To read a little more on my thoughts about and experiences with ME then go to Rambling by Theme box on the sidebar and choose ‘Health’

12 thoughts on “ME Information

  1. Holly

    Hello! I didn’t see any information on contacting you so I hope it is okay to leave you a comment. Thank you for reading it as all time and energy is precious! I am writing you about Karina Hansen who is a severe ME patient in Denmark. She was committed to Hammel Neurocenter on February 12, 2013 against her will for treatment that could be detrimental to her health. In Denmark ME is considered a functional disorder called bodily distress syndrome and the treatment is cognitive behavioral therapy, graded exercise therapy, and possibly anti-depressants. I am one of the managers for the Facebook page Justice for Karina Hansen .https://www.facebook.com/JusticeForKarinaHansen We have begun petitions to help Karina.
    Petition 1 – http://tinyurl.com/au3c7t4
    Petition 2 – http://tinyurl.com/p55nxdp
    Petition 3 – http://www.avaaz.org/en/petition/Justice_for_Karina_Hansen/?copy
    We now have a video available to share on youtube- http://www.youtube.com/watch?v=Dk3e8IWj7M0
    We are providing updates on our Facebook page so please like us to stay up-to-date. Please also see the links below for more information on Karina Hansen.
    Thank you for taking the time to read this!
    For more information :
    http://dxrevisionwatch.com/2013/05/11/something-rotten-in-the-state-of-denmark-karina-hansens-story/
    http://dxrevisionwatch.com/2013/05/25/human-rights-denied-something-rotten-in-the-state-of-denmark-update-1/

  2. I meant to say my ‘diagnosis’ is Fibromyalgia (http://looneyatoms.com/2012/08/02/fibromyalgia/) as I do spend a lot of my life in pain, but apart from the pain symptoms, all of mine are ME so like you I have asked to be referred to a specialist to help with pacing, as I am crap at it.
    Right now i am being flattened by exhaustion, which is what gets me the worst as it is accompanied by brain fog which i hate too. I have been too exhausted to work since June and it is really upsetting me, and now for the first time since diagnosis in 2001 I am having to jump through all the benefit hoops, all for £4.34 a fortnight Whoopee.
    Good to have find your blog xx

    • Ah, pacing. It’s a great thing until life gets in the way, that’s my conclusion! It’s tough to lose so much. Hang in there is I can say. There are still moments of sunshine despite all the storms. :)

  3. Billie

    So sorry to hear you have ME. Being chronically fatigued is something a lot of people refuse to understand because it’s an invisible symptom. I have MS (multiple sclerosis) and my main disability is my severe fatigue and it’s taken a lot of ups and downs for others to finally accept that this is real and very debilitating. Please check my blog for posts on my MS and my symptoms because I think you might find yourself in some of them.

    The only advice I can give you is indeed: pace yourself. It’s a continuous fight trying and learning to pace yourself and after having retired 3 years ago, I am still learning to pace myself. Some days I do well and I know that this is how I should be living, but other days I attack the days with as much vigour as my MS is attacking me. I believe that being mentally strong is a form of psychological medicine you are giving yourself but some days I cannot do anything safe from just existing and resting.

    I wonder, did you ever have glandular fever? This might be linked to illnesses like ME and MS, but it’s not proven yet. I do hear from lots of others with MS that they also had glandular fever.

    Stay strong, keep laughing and keep enjoying the little things. Your blog is stunning to say the least and I will be returning quite regularly to read your posts.

    • Thanks for visiting, I too have a close friend with MS and know, unfortunately, many others too. It’s pain, literally and figuratively! There does seem to be many similarities in the two, symptom-wise and trigger-wise. Keep strong yourself. :)

  4. Thanks for visiting my blog and leaving a comment. I’m so glad you did, as it brought me here to all this information about ME. My husband’s been suffering from chronic fatigue for 8 years now. I read your story and had a look at the links you recommended and it sounds like he’s actually suffering from ME. So thanks a lot for sharing your story and resources, it’s helped us understand it all a bit better :)

    • It’s a murky world this one but they say knowledge is power and I’ve definitely found it helpful to know what exactly I’m fighting. Helpful although not necessarily easier! I’m really sorry to hear of your husband’s long illness, I know it’s been tough on you both and thank you for visiting. :)

  5. In complimentary medicine, the mind and body are so very linked that I would tend to believe that a therapeutic outlet such as writing will in fact help with physical symptoms.

    Regardless of that, I wish you the best in your search, whether that search be for clarity, information, reflection, or peace.

    Good Luck!

  6. I’m glad you’re blogging. A creative outlet can be therapeutic. It won’t help you physically, but maybe it can help you mentally. I’m glad you found me so I could find you.

I'd love to know what you think, concrit is especially welcomed on fiction pieces. Thank you.

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