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All my fault?

Discussion in 'General ME/CFS Discussion' started by annedav, Jan 22, 2015.

  1. annedav

    annedav

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    Hi all,
    I'm new here and feel pretty desperate. Not sure if Im posting at right place but here goes.
    I wonder if anyone can help me. Any feedback would be greatly appreciated.

    For the past two and a half years I have been very ill with cfs, bed bound for one year but mostly housebound now. I initially had treatment with OHC in London doing their 90day programme which consists of 'stops' (like lightening process saying stop to thoughts), meditation, eft and relaxation. I've paid a small fortune and none of it has helped. In fact I developed a phobia to m.e thoughts and still can't get it out of my head that thoughts about m.e are causing the m.e. and if only I could stop thinking, I would recover. I am in such a stressed out state about it all and get such bad anxiety every time an m.e pops up, its just making me feel so ill. I've also spent the best part of two years meditating and relaxing which isn't working at all.

    I came across this website and realised that maybe it's not all my fault after all. Maybe im not responsible for causing m.e with my thoughts. I definetly won't be helping myself being in an anxious state all of the time but it seems to me that you guys on here have so many other ideas about what is causing m.e.

    I've tied myself in knots for years about this trying to get out of my head by practising mindfulness and the power of now by being present fully but I just can't do it.

    Maybe this illness isn't my fault after all?
    I'd be so grateful if anyone could help me.
    Warm wishes.
     
  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Hi, welcome to the forums.

    So sorry you have been struggling. This is not uncommon. I blamed myself when I was undiagnosed. It was a difficult time. But I know better now.

    Being ill is not anyone's fault, ever. M.E. or anything else.

    Here is a recent article discussing current thought by some of the leading doctors (it is from Medscape Rheumatology, which requires free registration, but is reprinted in full here):
    http://www.meassociation.org.uk/201...illness-medscape-rheumatology-8-january-2015/

    best wishes.
     
  3. adreno

    adreno PR activist

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    No, it's not your fault. Don't listen to anyone telling you that. If mindfullness etc doesn't help you, you can safely stop doing it. It's okay to think about ME/CFS, and it won't make you worse (although it can be somewhat depressing to constantly focus on your symptoms).
     
    Last edited: Jan 22, 2015
  4. taniaaust1

    taniaaust1 Senior Member

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    That is unbelievably cruel :( and so so wrong. I hope you stay around this website so you can be unbrain washed and see it isnt your fault at all. Its not your thoughts making you ill. You do not need to fear your thoughts. Yes they've probably helped some but those others didnt have what you have, unfortunately different things are lumped under the same label.

    Im a yogi.. Im experienced in meditation, I used to teach meditation. When I got ME, I found I could no longer meditate well and wondered why? It wasnt until 10 years or so later did I finally get the answer.

    I had an EEG done and they found my brain waves were abnormal, they didnt what a normal persons does when they shut their eyes and relax and I assume are also different when Im asleep. The abnormality spotted on my EEG is a common ME abnormality and Im sure that was what caused me to no longer be able to meditate as I was used to do. So I think its a cruel thing when they tell people to meditate to recover, when our brains may not even be working right enough for us to be able to do this properly or even benefit how a normal person does via meditation.

    ME is an illness which isnt caused by a psychological issue.
     
  5. jeff_w

    jeff_w Senior Member

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    Hi,

    M.E. is a real, physical illness. It's as real as cancer. Would you beat yourself or anyone else up for getting cancer? Of course not! You have nothing to be ashamed of. You did nothing wrong.

    M.E. is as serious as multiple sclerosis. Imagine that. You have one of the most serious illnesses in the world.

    The program you were in was downright abusive. It is exactly like telling a group of cancer patients that they are responsible for their cancer. Ridiculous!

    This board will be a very healing place for your self-blame. Welcome!
     
  6. annedav

    annedav

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    Thank you all for replying to my post.
    I feel a small sense of relief but I suppose this phobia is so deep rooted it will take time to believe it. I was told that if I got my body into a healing state then it is so intelligent it can recover itself. And I know from the OHC forums that people do recover this way but try telling someone to recover they must get into a healing state makes you feel more anxious. Well it did for me anyway.

    I've also read Dan Neuffers CFS unravelled and been in touch with him many times. He believes the same thing. If you forget about m.e and just enjoy your life then it will go. But now the heck can you do that when you feel so ill? I wish I could forget about it it everyday is such a struggle.

    Coming onto this forum has shown me that everything I've been taught in the past two years including Mickel Therapy and Reverse Therapy and Lightening Process isn't the answer for everyone. Instead of beating myself up I suppose I should be kinder to myself and realise there's more stuff going on in my body and it's not just my mind so thank you all for that.
     
  7. annedav

    annedav

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    Thanks Jeff
    th
     
  8. annedav

    annedav

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    Thanks for that Jeff

    I've often wished I had cancer over the years instead of m.e as at least there would be some help and it wouldn't have been all my fault because I couldn't get the techniques to work for me. It's so hard to meditate and be relaxed when your neurotransmitters are crazy and you have no concentration. I believed if I
    persevered it would work eventually, not so. I've just made myself worse.

    It all seems crazy now after coming on this website although I do see improvements when I'm not anxious but I suppose that's understandable.
     
    green_monster and justy like this.
  9. Blue

    Blue

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    Please don't believe what people like Dan Neuffer are saying - he isn't even a doctor - he is a layperson who seems to have set up a website which perpetuates wrong information about ME/CFS.

    ME/CFS is a neuro-immunological illness as categorized by the WHO. Don't let people tell you otherwise.

    All the best!
    Blue
     
    Last edited: Jan 22, 2015
    green_monster, beaker, Min and 5 others like this.
  10. annedav

    annedav

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    Thanks Blue.

    He's a German physicist who had m.e for seven years. All I've ever known is that's its physiological so I guess it's going to take time to stop worrying every time is have an m.e thought. It's so deep rooted now. I've spent nearly £20000 on all these treatments What a waste of money.
     
  11. annedav

    annedav

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    Hi Adreno it's not that I want to focus on my symptoms as I know that would be depressing. I just don't want to jump and activate fight/flight response every time I have an m.e thought which is ridiculous.
     
  12. justy

    justy Donate Advocate Demonstrate

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    Hi, i'm so so sorry you have had to go through this awfil experience on top of having such a horrible disease. When I was more mildly affected I also believed I could heal myself through my thoughts and became quite obsessive about doing affirmations etc.

    Now I am more severely affected and I see that is bullshit. Meditation helps me to stay happy and cope with my illness, but I do not believe it is curative - or that my thoughts cuased my M.E.

    Last year I finally had a partial answer when I had private testing that discovered that I have three intracellular bacterial infections, and my immune system is a mess. Unfortunately I am too ill for treatments right now, and the only thing I can do is rest as much as possible, but at least I can see that it is not in my head, after being misdiagnosed by NHS GP's for so many years with 'anxiety disorder'.

    Funnily enough, the more validation I have had for my illness and the more evidence o have that it is physical the less anxious I have become. Now I know that It is normal for me to feel vulnerable if I try to go out alone, because I am vulnerable because I am so ill. I also know that one of the infections I have - Bartonella can cause a lot of psychiatric problems including anxiety and panic disorders and im hoping that if I can ever treat it things may improve.

    Glad you found the forum. I know it sounds simplistic to say not to worry about the thoughts - I have had OCD symptoms (probably caused by the Bart) so I know how insidious unhelpful thoughts can be, but I think once you fully accept that you are not creating your illness - and coming here and talking about it is a first step - then the obsessive thoughts will gradually lose their hold on you.

    Take care,
    Justy x
     
  13. annedav

    annedav

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    Oh people here have been so lovely to me already. I've just had a cry. I'm so grateful to you all. I've been carrying all of this heavy load on my shoulders for years and even though I've known it's bringing me down, I didn't realise how much. It's massive.

    A massive part of the problem is I've absolutely refused to accept m.e as part of my life. I've fought so long and so hard to be rid of it believing if I could only stop the thoughts I would do it eventually. Not realising until now that im making everything ten times harder for myself. Until an hour ago I totally and utterly refused to have it as part of my life. No wonder I'm anxious. I've made it my job 24hrs a day to rid myself of m.e. No wonder I couldn't understand it when my daughter comes home every couple of weeks I'm so much better. I always thought it was because I wasn't having m,e thoughts but it's not its because I was relaxed, less stressed and not focussing with all my might on getting rid of thoughts. If only I could let that go.

    That was a lovely reply Justy. I'm so grateful. You've made my eyes open wider. Xx
     
  14. annedav

    annedav

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    Oh and Justy I forgot to add I have candida and leaky gut and I know that can cause anxiety so that won't be helping me. X
     
    green_monster and justy like this.
  15. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    It is not your fault, life is random and unfair.

    You're not alone in wishing that

    Yes one of the most important things I learnt is that is is ok to spend my energy on living my life, on stuff that I enjoy, that makes me happy. I can't spend all my energy on ME it isn't any way to live.

    I only joined this site a couple of months ago, and am amazed at how much of a difference it has made to me, mentally, to be talking with people who understand.
    also there are so may well informed people here, I'm amazed at how much information there is and love the discussion about research and treatments, all questioning it and discussing it.
     
    green_monster, beaker, MeSci and 8 others like this.
  16. Valentijn

    Valentijn Senior Member

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    Being brainwashed into denying that you're ill can be quite dangerous. I recall one case of someone who had to be hospitalized due to severe disability, but kept insisting that he wasn't sick. Basically he had to be deprogrammed.

    Usually ME patients try to avoid psychologists for obvious reasons, but you might need to see one to get help with coming to terms with having an illness. I suggest shopping around carefully to make sure you don't get another bad one! The bad ones will lie about their beliefs regarding ME/CFS, so it's a good idea to ask other patients if they know of a good therapist who works with physically ill patients.
    If someone recovered due to CBT, LP, or related "therapies", then they simply did not have ME/CFS to start with. It's nice that the treatment helped them with whatever problems they had, but it's incapable of curing or improving the physical aspects of a biological illness.

    Misdiagnosis is a big problem, especially in the UK where they have tried to turn ME/CFS into a psychological fatigue disorder. Thus many people are told that they have ME/CFS, but they really just have chronic fatigue caused by something else, including psychological disorders for which CBT might actually be helpful (though even that is debatable).
    I seriously doubt that those therapies are the answer for anyone, aside from the practitioners seeking to make some easy cash.

    Anyhow, there's a ton of research proving that ME/CFS is a biological disease, at least it is when defined properly :D And almost all of the psych research into ME/CFS is very much lacking in scientific rigor. They also tend to bury and ignore contradictory results - did you know that no study of CBT/GET has ever shown a significant increase in actual objective activity levels? When actometers are used, they show that patients can't become any more active during or after treatment, even if the patients are successfully trained to subjectively report improvement on questionnaires.

    The whole thing is a farce, and you're just another one of the innocent victims of a nasty propaganda campaign.
     
    Kyla, green_monster, PennyIA and 8 others like this.
  17. Cheshire

    Cheshire Senior Member

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    I don't think anyone wants to be sick; whether the illness is organic or psychiatric!


    Those people that make people feel guilty for being sick are manipulative.
    The only person they are helping are themselves. These theories bring them money, a feeling of power towards weakened people, and the assurance that they are better people because they manage their life better than sick persons.

    This is just disgusting. They are taking advantage of people desperate to find an answer.
     
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  18. ukxmrv

    ukxmrv Senior Member

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    I had some discussions with the OHC after completing their questionnaire a few years ago. The impression that I got was that they thought ME and CFS (same thing to them) was a lifestyle disease or a form of burnout.

    Wouldn't touch them with a barge pole after that.
     
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  19. alex3619

    alex3619 Senior Member

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    @annedav

    Worrying about worrying about ME seems to be your biggest issue aside from the ME itself. There is no gain in worrying about it, especially blaming. There is zero substantive evidence that negative thoughts cause it. Its an unproven idea, linked to unproven hypotheses and treatments. There is also no sound published evidence that these kinds of therapies work to substantially improve things.

    Attitude can help you cope, its a quality of life thing, but it wont induce a cure.

    Learning to accept ME is really hard, especially when you get all this wrong information and people tell you what to do. It took me seemingly forever to accept it, and even more to learn to pace my activity. I also spent a lot of money on treatments that did not work, tests that told me nothing, and medical advice that was worse than useless. You are not alone. Its almost a rite of passage for ME patients.

    I hope you find some answers that help you. This forum is one place to start looking.

    Patients under five years sick have a higher chance of full remission than long term patients. I hope things improve for you soon.
     
  20. annedav

    annedav

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    Yes that's what say it is, burnout. They say its like you have so many stresses in a boat and you just keep adding more (relationship worries, financial, viruses) and eventually the boat sinks but if you spend time in a healing state the ANS will relax. Alex Howard, founder of OHC had m.e for seven years and recovered this way. I must say I do know a few people who have recovered with them as they have a forum called OHC community a bit like this one.
     

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