It's all about ME!

• Guest 650

  • Registered: 12 Mar 2008
  • Posts: 542
  15 May 2008     14:202135
  #1      
  No ... not what you might think - but ...
  
  ..... ME/CFS awareness week, this week.
  
  It so happens that two of my daughters are sufferers. One has been ill for three years, the other has been recently diagnosed. They're amongst the estimated 240,000 sufferers in the UK.
  
  Nobody really yet knows what causes it - though typically it can be triggered by a viral infection, such as a 'flu-like illness, perhaps combined with another stressful event. Up to 25% of sufferers are so severely affected they are house- or bed-bound - some have to be tube-fed. There is no "cure" yet known.
  
  Myalgic Encephalopathy or Encephalomyelitis/Chronic Fatigue Syndrome is a beastly illness, with many and varied symptoms. Apart from the chronic devastating fatigue (my daughters collapse with it), you can get intense muscle and joint pain, rotten headaches, "brain fog" (confusion, loss of memory, difficulty thinking), severe sleep disturbances, and high sensitivity to being touched, and to things like perfumes, or alcohol, or even prescribed drugs (my youngest daughter became temporarily paralysed after a recent injection for a tooth filling).
  
  It's also a sneaky illness, because it doesn't show up on medical tests currently available. Blood tests etc come back as "normal". So, despite it's having been recognised by the World Health Organisation since 2002, it's not always understood or readily diagnosed.
  
  So that (apart from fund-raising) is what ME/CFS awareness week is all about - could there be a sufferer near you?
  
  More information is on the ME Association website - http://www.meassociation.org.uk/content/view/90/83/1/1/ and other pages there, and there's also an Association for Young People with ME - here are their "hard facts" - http://www.ayme.org.uk/article.php?sid=14&id=211
  
  Forgive me for a slightly long post. But if this can help just one person .....
  
  ME Awareness Week. Be aware, and do look after yourselves.
  
  
  
  (I'll copy this across to the other forums, if you don't mind.)
  The Dover War Memorial Project
  www.doverwarmemorialproject.org.uk
• Guest 643

  • Registered: 12 Mar 2008
  • Posts: 1,321
  15 May 2008     18:292145
  #2      
  Hi Maggie,
  Although I had heard of ME I didn't really know what it was, but now I do and it sounds really horrible. I feel so sorry for your daughters and to anyone else who suffers from it. I never realized the awful things that it envelopes, a truly awful disease to suffer from.
  Thank you Maggie for making us aware of this illness and what to look out for. I do hope your daughters are well very soon and please give them my best wishes for improved health and a speedy recovery.
  Love Jacqui x
  There's always a little truth behind every "Just kidding", a little emotion behind every "I don't care" and a little pain behind every "I'm ok".
• Bern

  • Location: Dover
  15 May 2008     20:192167
  #3      
  Thank you for that Maggie - another powerful factor with ME is the stigma you kind of mentioned - because it's not easily identified "medically" people come up with all kinds of New Age/psychobabble theories which sort of blame the person with ME, which is most unfair.
• Guest 650

  • Registered: 12 Mar 2008
  • Posts: 542
  15 May 2008     22:072172
  #4      
  Thank you very much, Jacqui, and I will certainly pass on good wishes to both daughters. Yes, for me also, who have two very close family sufferers, it's taken quite a long time even to begin to understand, and because it expresses itself differently in each individual, and also can fluctuate within the same person, both in symptoms and effects, it makes it even more difficult to get hold of.
  
  That's why, I think, that it's important to try to raise awareness - not only because it's very distressing and worrying for sufferers who may not know what's wrong (and even if they do), but because, as Bern rightly notes, there do seem all kinds of judgements around it. They vary from "laziness" and "malingering" to the most convoluted of amateur psychoanalysis as people try to make sense of something unfamiliar. These theories can add stress too, which is something the sufferer is supposed to avoid, and unfortunately, interventions based on misplaced judgements can actually exacerbate the illness.
  
  Further research and specialist training for our professionals is maybe also something that extra awareness may ultimately bring about.
  The Dover War Memorial Project
  www.doverwarmemorialproject.org.uk
• Guest 653

  • Registered: 13 Mar 2008
  • Posts: 10,540
  16 May 2008     07:082175
  #5      
  It is indeed a most debilitating disease and certainly has a stigma attached - for many poeple look upon it as described above -being a lazy person or malingerer, which couldn't be further from the truth.
  
  Good Luck to them Maggie - it must be very worrying for you.
  
  
  
  
  
  Roger
• Guest 656

  • Registered: 13 Mar 2008
  • Posts: 2,262
  16 May 2008     09:482188
  #6      
  Maggie, so sorry to hear about your daughters both suffering from ME, as said in other postings this condition isn't taken as seriously as it should be. Hopefully the awareness week will make it more understandable, I wish all sufferers and their carers well as they need all the help they can get.