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Daily Mail: 23-year-old takes her first steps in NINE years after being confined to bed with ME

Discussion in 'General ME/CFS News' started by Firestormm, Jul 31, 2014.

  1. Cheesus

    Cheesus Senior Member

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    I am scratching my beard over this one. We Buddhists have what you call 'dependent arising'. This is the concept that nothing arises entirely independently. The imagery of a bed of reeds is given, where shifting one reed will move others. Perhaps playing cards uniformly sprawled in an overlapping pattern gives a similar idea. Start to flip one and the others will flip too. Differentiating cause and effect in circumstances where effect can subsequently feed into cause becomes very difficult. Again, for treatment interventions it would not always be necessary, or possible, to untangle this web.
     
  2. Cheesus

    Cheesus Senior Member

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    I just read this properly. I didn't realise you were referring just to ME, I read that you were referring to ALL disease. Yes undeniably ME is 100% biological. Still, I am personally aiming to treat it using biological, social and psychological interventions. Each element can affect the others.

    ETA: You know, I don't think I have EVER so wholeheartedly agreed with you, Valentijn.
     
    Valentijn likes this.
  3. taniaaust1

    taniaaust1

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    Obviously she has had functioning improvement if she couldnt walk before yet now can.

    @Firestormm

    There is an issue out there with people if a severe ME person is in recovery or recovering.. or even worst in full remission!! I got given crap, many many years ago when I had involvement with the Hummingbirds ME/CFS people (a very ill lot) as I ended up recovered over years after being completely bedbound with very severe ME (I had been one of the ME horror stories we rarely hear about). I had many people then dejecting that could of ever had ME (I think I was even blocked/kicked from that group for sharing how I'd recovered from very severe bedbound ME).

    Unfortunately we seem to carry the risk of getting ME back , hit by virus which is going around and you may well find yourself back in this horror again.

    I kind of have my heart in my mouth when I read of stories of severe ones like this thread, making great improvement as there is something even worst then getting ME in the first place, that is getting it back again esp if you were extremely severe and bedbound before and know what all this means. She is so happy to be improving but that could be pulled away from her at any time.
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    alex3619 likes this.
  5. alex3619

    alex3619 Senior Member

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    If you break a bone there are psychological and social interactions that affect the recovery experience. Yet the recovery is essentially biological, as is the damage. The underlying notion of BPS is sound, but from its very inception it has been used to justify psychosomatic causation in a world in which psychosomatic medicine was becoming increasingly unpopular and untenable. This goes right past Engels and into the early writers on this in the 30s and 50s.

    So far I do not think any real disease is psychosomatic. Not one. I do think thought disorders exist though, including those derived from brainwashing, whether this is from serious brainwashing in re-education camps, or systemic brainwashing from aggressive public relations. Yet such thought disorders do not directly cause disease, though they might lead to behaviours that increase disease risk.

    No claim that any particular illness is psychosomatic has ever been substantiated. My challenge is still out there. If any have been substantiated, then please cite the paper. If so many papers have done this then it should be easy. I doubt it can be done though. I think what I may get is stuff that is very poor science, referencing yet more poor science. Indeed I suspect much of it is nonscience and pseudoscience.

    Yet nobody doubts that therapy and attitude can substantially modify someone's experience of recovery. Recovery can be a slow horrible thing or a much easier experience. There is a role for therapy of all sorts in this. There is not however a role for all theories.
     
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  6. taniaaust1

    taniaaust1

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    OH NO that is scary, It sounds to me that she's really had a lucky break but probably will end up right back to where she started due to what they are doing!!

    Has her facebook got an email address so I can contact her, I came back from a full bedbound severe state to full remission and it certainly wasnt by what her doctors seem to be doing. After being bedbound long term I got lucky as something shifted to put my ME on the path to improve and from there aggressive resting and pacing my activities, only doing enough so not to cause any downfalls lead to further and further improvement.

    Putting pressure onto her body by pain will surely cause stress for her body and herself even if she is working hard to stay postive with pain. (Im sure she is working very hard mentally, emotionally to keep from letting the pain be affecting her positive attitude due to she's improved).

    OMG she's going to fall, she'll only get more and more pain with activity and she'll feel emotionally destroyed if she ends of loosing all the gains she had and will then have less will to deal with the whole illness. (this story is now near unbearable for me to read. I want to email her and tell her to listen to her body and what its saying to her).

    Sighs additional support often helps ME people some and can help turn the illness around.
     
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Oh - I thought it was the British Psychological Society!
     
  8. taniaaust1

    taniaaust1

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    OMG, if I did something like that I'd be sick with excessive adrenaline for many hours, it almost gives me an adreanline rush thinking about it.

    Some parts from that

    umm simple symptom of fatigue????

    Umm "behaving" .. "in the mind".

    I cant stand to finish reading just page 5 of it.

    Obviously they will when she looses all that very lucky gain she's made. Blame her and dismiss her and leave her wallowing in her then extreme sorrow over her relapse.

    What's the bet she hasnt read all this, she should be send that link (that is the place where she's at isnt it?).
     
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think maybe the simple answer is UK vs US. Is @cmt12 in the UK?

    ME sufferers in the UK do get bounced around, AND there are no, or very few, real specialists. I have seen a urologist for my polyuria on the assumption that it was bladder- or kidney-related, an endocrinologist (again for the polyuria, and he didn't understand it despite being a top UK endo) and had an interview with ME immunologist Prof Pinching, who basically just said that I was managing it very well, understood it well and was doing the right things.

    Others are sent to neurologists, psychologists, gynaecologists (for the common co-morbidity PCOS), etc. No doctor in the UK that I have seen has 'got' the fact that all these things are ME-related and probably have common causation.

    EDIT - except Prof Pinching, although even he baulked at 'believing' in chemical sensitivity.:(
     
    Last edited: Aug 2, 2014
    golden likes this.
  10. Wildcat

    Wildcat Senior Member

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    Really, in Britain, the idea that 'psychological factors' have an impact on ME (recovery or perpetuation) is like building a residential housing estate, neglecting to install plumbing, gas, electricity, sewage services, but expecting the residents' quality of life to be really enhanced by the lovely interior decor and landscape gardening.....

    ........and then spending 25 years doing studies which all conclude that the landscape gardening and interior decor are the most important factors affecting quality of life on that housing estate!
    .
     
    Last edited: Aug 2, 2014
    ahmo, alex3619, TigerLilea and 2 others like this.
  11. taniaaust1

    taniaaust1

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    No as those with ME can have sudden improvements anyway without any of those things. I did.

    I personally this she just got lucky, thing is she will end up loosing her gains if they push her with GET (if she does have ME).
     
    Wildcat likes this.
  12. xchocoholic

    xchocoholic Senior Member

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    Does anyone know if she or her family know how to do a poor man's tilt table test ? Are they tracking her hr and bp supine, standing and sitting ? This info could be helpful for her if it shows OI or other irregularities.

    If we look at Christopher Reeves example, she could have brain or spinal cord damage causing her weakness too. Although, I had ataxia and white lesions on my brain and was never too weak to stand up or walk for short periods most days. I just felt horrible and had to specifically tell my legs to move if I went more than about 200 feet. My vision went wonky everytime too. OI is causing petite mals and sob nowadays when upright.

    It's shocking that the UK medical profession is so behind on diagnosing me/cfs.

    Tc .. x
     
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  13. Mij

    Mij Senior Member

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    I read on her facebook page that she takes meds for seizures.
     
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  14. taniaaust1

    taniaaust1

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    I think that is huge progress if she previously was completely bedbound and couldnt even be raised up. Maybe she previously went into too much shaking or something to do that before.

    I have times even now when I couldnt even be raised in that manner, so I can understand how over joyed someone who never could before be raised up for years, would be to make that improvement which I know to most doesnt sound a lot but to someone who couldnt even have that done before, it is a lot.

    I guess her therapists are all excited about this as they probably think they can work with her now like they would any other person they are rehabilitating from other illnesses, thing is that isnt necessarily at all so the case.

    One thing Im sure of being bad for so long and not being in that position for a long time, she'd have some quite major OI going on (just like astronaunts get). dont they need therapy for them to get over that? So possibly she could improve further by just keeping her upright for a short time each day (even if its by dangling her and she not using muscles) and extending this till she gets to the point she hasnt got OI from being bedridden (thou there is every chance she will have OI anyway).
     
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think that it's just the specific type of CBT used in conjunction with GET that is the problem in the UK. As you say, it is designed to convince patients to ignore their symptoms - to 'break the link' between exercise and symptom perception. This makes me very angry, as it takes a long time and a lot of hard work, trial and error, for patients to learn the link and use it for essential pacing strategies. To then force them to unlearn it is criminal.
     
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  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    That's why she is trying to get a fully-reclining wheelchair. I think someone is crowdfunding to buy her one as the NHS won't give her one (I think I saw it on her Facebook page). Just did internet search for 'reclining wheelchair' and found them on ebay for under £400, i.e 100 times cheaper than the estimated treatment at that clinic, which the NHS DID fund!
     
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  17. taniaaust1

    taniaaust1

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    It's human to wonder if the other has the same illness as oneself or not and be trying to figure out.

    To me from the things said, I personally believe she has ME (not cause she was bedbound for ages as other illnesses can do that too) but from the other symptoms which have been mentioned coming from her FB posts people have posted.

    What is not good is if someone goes and says she couldnt have had ME due to getting better. That's simply untrue that ME patients cant improve especially if they are getting more support!

    You will always get ME people thou wondering if someone recovering was a ME case or a CFS one and shouldnt expect ME people not to wonder that when we are on a mixed ME and CFS website and the big world out there mixes these two things.

    Some people wondering, doesnt imply at all these people arent happy that a very sick person improved and that is a harsh assumption to make.
     
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  18. taniaaust1

    taniaaust1

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    I got the impression from the original article that it took a lot of work for her to get to that point. She could of been learning to sit and building those muscles to do so, no doubt doing some exercising her legs in bed etc in the months or so before getting out of bed. I wasnt as far as I read an instant over night progress (and then walker, haress and people holding her up were used). She herself said she had to work up to it. Sounds logical progress to me for something who'd been laying for a very long time.
     
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  19. taniaaust1

    taniaaust1

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    not wanted on the forum by many? ***wondering if when you say that if you've had problems in other threads as I certainly didnt see many having an issue with you***
    ..............

    This thread really seems to have people reacting. Recovery threads often to seem to end up with lots of reacting people.
     
  20. xchocoholic

    xchocoholic Senior Member

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    I'm doubting ME and CFS as a proper diagnosis in general. Imho, to assume any pwc would be against another pwc making improvements sounds ludicrous to me. Esp people on a health message board.

    Some of us see ME as a wastebasket diagnosis and are looking for the "real" cause of ME. So far lyme, celiac, mold and weakened immune systems / multiple infections are apparent. But are they causes, co-factors or a result ?

    Saying ME is a wastebasket dx doesn't mean ME isn't real. Our symptoms are real. We just don't know what's really causing these because proper testing wasn't done to determine the cause or co-existing factors. They're lumping people with similar symptoms together not similar lab results .

    I'm not sure how common improper testing is for pwcs in the US nowadays.

    Tc ... x
     
    Last edited: Aug 2, 2014
    bertiedog likes this.

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