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I have always tried to be so positive when it comes to this illness but this year it feels different , it feels like time to give up! How do
Living with Myalgic Encephalomyelitis can feel like your whole life has been snatched from you .
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Patients tell us what they want from CBT, GET and Pacing. And we tell the medics what needs changing.
“CONCLUSIONS AND RECOMMENDATIONS
Cognitive Behavioural Therapy (CBT) We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.
... Our results indicate that graded exercise therapy should form no part of any activity management advice employed in the delivery of CBT, as this also led to a negative impact on outcomes.
... However, our results did indicate that, when used appropriately, the practical coping component of CBT can have a positive effect in helping some patients come to terms with their diagnosis and adapt their lives to best accommodate it.
Graded Exercise Therapy (GET) We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.
... The other major factor contributing to worsening symptoms was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’.
Pacing Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.”
ME Awareness Week - Cognitive Problems Many may know ME causes severe fatigue but there are many other symptoms too. One set of issues that often make me, and I'm sure others, self-conscious is the cognitive problems that come with the illness. Aphasia: I like to think of myself as fairly smart and yet I often feel like an idiot because I can't remember simple words or my brain substitutes the completely wrong word. It's incredibly frustrating as someone who is quite well-read to have your vocabulary go missing whenever it feels like it. Agnosia: This is something I often try to hide but may mean other people think I'm being rude. At times I struggle to recognise people faces, especially those I don't see on a regular basis. My short-term memory is particularly shot on this and as my partner might put it, I'd be the worst police witness to a crime possible. Customers would get me to put something by at the charity shop & come back an hour or so later - Only for me to look at them blankly & them look at me like I'm an idiot. 😐 (If they were wearing something distinctive then I'd be okay). General Brain Fog & Overload: This means when I'm tired I struggle to focus on even a simple conversation or task. It also means I can't cope with too much input at once so I struggle greatly with trying to socialise in a big group. It might make me seem aloof but when you're struggling with so many people talking, it's hard not to just retreat into yourself and the sanctuary of your own somewhat muddled brain. Sorry for long post but I hope by sharing I can help people understand ME a little more. #MECFS #MEAwareness #CFS #SEID #myalgicencephalomyelitis #meassociation
Going blue for ME Awareness month. 💙 For about 10 years I've suffered with this illness, with little to no help from doctors. Although I'm now much better than what I was, I'm still nowhere near 'normal' and have to be careful, pace myself. It's not just tiredness as so many wrongly think - it's extreme fatigue, it's pain every single day, brain fog, nausea & sickness, memory difficulties, balance problems...and the list goes on. Not to mention the mental & emotional impact of losing who once were. What's as damaging and makes this illness even harder to cope with is lack of understanding. The battles you have to fight simply to get others to believe you're ill, a fight you don't need when you already have so little energy. The judging looks when you have a good day & for once feel like going out and ill informed advice to just 'push' yourself, (when you've already pushed yourself by drying your hair that day). So if you want to do anything this month to help the thousands of ME sufferers, try to be more understanding. Understand we truly are ill but we have good days amongst all the bad days and the good days only come when we PACE ourselves not push. #meawareness #meassociation #myalgicencephalomyelitis #SEID #CFS #goblue
