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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. taniaaust1

    taniaaust1 Senior Member

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    I think part the problem we are seeing right now with the comments is that many people dont understand how a person can be worst then what they are hearing with how she's doing now and to them it doesnt get much worst then that, so hence they dont understand the actual improvement she's had.

    I so wish someone could film me on at a bad time as I think it would add to this understanding, a time when I cant be easily held up to stand and what happens when its tried. You would see two people either side of me and me not even being able to coordinate my legs and parts of my body going everywhere.

    It isnt uncommon for those either side of me to be at risk of being hit in the face as my arms I have no control over sometimes while like that so they randomly just fling about wildly, no control over my body at all even when being held, Ive nearly given people trying to help me walk a blood nose due to my wild uncontrolled body movements (that is if Im in any state to even be sat up or raised, sometimes I cant be).

    Added to this issue is cause I cant coordinate my legs at times like that, it means that when the people try to walk me, my two legs were at times drag along the floor (at times I may as well be a rag doll they are trying to take for a walk with my legs). (I soo need to borrow a video so I can try to get on photo what very severe ME is like when I crash, Ive been trying to but cant get anyone to loan one). It is quite likely Jess may of had issues like this too so previously couldnt have had done as being done now to her.

    From my own observations of very severe ME cases, generally they have severe neurological issues.

    Is she able to be raised without loosing body control with arms? Now able to hold her neck up when raised? Now able to coordinate her legs one after the other even if in a sling? Very possibly she may not have been able to do any of that before and without this kind of body stabilisation the person cant use walkers properly, slings etc

    ...........

    Just like an improvement has happened in a baby now able to walk in a supported walker, there is a big different in a baby who cant do that to one who can. Those with babies, remember back to seeing your baby walk in a walker for the first time, wont you over joy at the babies progress?? You saw that as a development. You didnt think of it as thats nothing.

    ...........
    (excuse me that Im giving up correcting my word errors as long as people can probably work out what Im trying to say, my brain is tired so Im just going to correct any major sentence ones. Im really trying hard to get throu this thread tonight but I dont think Im going to be able too).
    Last edited: Aug 2, 2014
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Because it suits short-term financial/political purposes, I think.

    The BPS school's (recently-knighted:eek:) Simon Wessely also dismissed the illnesses of victims of the Camelford (Cornwall) water poisoning incident and the Gulf War veterans as psychological. Water services were on the verge of being privatised when the poisoning incident occurred, so it was inconvenient and had to be brushed under the carpet somehow. Gulf War illness could have led to massive compensation claims - again, very inconvenient, so had to be treated the same way. Governments love psychosomatic diagnoses as they save money in the short term, which is the only kind of timescale that matters in party politics.

    And they somehow get away with it.
    ahmo, golden, Wildcat and 4 others like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    I think some wonder that as she's may of suddenly be supplied with all these aids to help her be on her feet along with more likely then not CBT. CBT can make people think they are improving when they are not.

    Ive seen this happen in ME/CFS patients too even without CBT when they decide to convince themselves they are improving but arent really. Ive seen with my sister, she went throu this positive thinking fad as she couldnt accept she was maybe even worst at the time so convinced her self she was getting better (and she then went around telling everyone she was getting better).

    On questioning her deeply and not allowing her to brush things off, I found out a heap of major stuff going on eg people having to carry her back to the car when she went to pick her children out from school as she couldnt walk back etc etc. There certainly had not been improvement (maybe even a worsening had occurred) but it was simply a case that she wasnt accepting her reality so she actualy convinced herself she was improving thou the facts showed that wasnt so at all.

    Others who have done this, Ive later heard them admit they fooled themselves or werent really facing reality at the time. Others due to better pacing end up thinking they are improving (I think we all learn to pace better as time goes by) but all which is happened is they've changed how they do things. If they went back to how they used to do things, they'd see they are no better then before (so in other words just a case of better management rather then improved health). Of cause that isnt the case thou for all.

    So it isnt always so that someone is actually improving in their health when they say they are thou of cause most when they say they are improving actually are.
  4. taniaaust1

    taniaaust1 Senior Member

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    Im going to disagree with this, someone posted in the comments something from Jesses FB and from that she's been told to ignore her pain she's getting from all the therapy she's doing and she's told the pain is a good sign. To me that is dangerous CBT. The kind of CBT most of us are against as it can end up being quite damaging. (in this manner it can be as dangerous as GET is).
  5. lansbergen

    lansbergen Senior Member

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    One can only hope they are not killing her.
  6. taniaaust1

    taniaaust1 Senior Member

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    I dare say they are risking that seeing how bad she was before, if she crashes bad, it could easily be worst then her original state.
    MeSci likes this.
  7. Bob

    Bob

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    lol, it took me years to work out what BPS refers to! (I never thought of asking!) I wish we wouldn't use abbreviations on this forum!
  8. taniaaust1

    taniaaust1 Senior Member

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    GET has given itself a really bad name due to most use it. I do think it could be useful thou to find out ones limits (testing things bit by bit) and then make sure one stays under these.. Basically all ME patients do hit a wall with GET at some point (unless they are recovering but I do not believe GET really aids in recovery of ME people. Me people get to the point where they will not be able to increase activities any more without giving themselves negative symptoms and more ME people just cant add in any extra activity without declining at all in the first place.

    GET is useless to most.
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  9. taniaaust1

    taniaaust1 Senior Member

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    :( So I guess that means they will just increase her drugs further when the GET makes her worst.
  10. taniaaust1

    taniaaust1 Senior Member

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    Does anyone know if the NHS gives others the wheelchairs they need? eg if it was a MS patient do they help get suitable wheelchairs?

    If this is so, maybe this could be taken to court and proved to be an act of discrimination and neglect. Im currently in the process of trying to take my states disability service to court over all this including the wheelchair situation. They refused to give me the wheelchair I needed for a couple of years and they had a warehouse full of them not being used. I was discriminated against due to ME/CFS.

    Ive recently found out that some laywers come out to the homes of bedbound/housebound people, and they also often have no win/no fee set ups for these kind of cases.
    ..........

    Wasnt it only last year that an english ME person won a huge court win of over 1.2M dollars (it could of been more) after being treated unfairly over something (it wasnt against the gov thou but this win and the amount really surprised me).
    Last edited: Aug 2, 2014
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  11. Firestormm

    Firestormm Guest

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    Just to let you know:

    Untitled.jpg
    And it was raised in under 12 hours. This was for Jess's wheelchair. You know the young girl who has the same diagnosis as you do.
    Last edited by a moderator: Aug 2, 2014
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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Brilliant!
    Last edited by a moderator: Aug 2, 2014
  13. Firestormm

    Firestormm Guest

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    For those that haven't or wont read Jessica's Facebook page.

    Some background from her:

    Last edited by a moderator: Aug 2, 2014
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  14. taniaaust1

    taniaaust1 Senior Member

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    Wow that's amazing, thanks for sharing. It thou still dont make it right that government health systems are treating ME people differently to those who have other illnesses. (I do have my wheelchair now, but after a long fight to get what they should of given me in the first place).
    Last edited by a moderator: Aug 2, 2014
  15. taniaaust1

    taniaaust1 Senior Member

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    Thanks for that Firestormm as I dont get FB. She gets the same symptoms I do

    Interesting she's got crawling skins thing as I used to have that too. Yucky thing, for me it also came come with painful bitey feelings and can happen with coexisting with ME severe Morgellons too. I wonder if the skin sensation issue is far more common in the severe ME patient group as I dont hear of all that many with it. (she probably didnt post all her symptoms but just a handful).

    I beleive that the ME made me vulnerable to some kind of parasite which was affecting my skin, salt and bicarb baths used to bring me some relief and same with putting anti-parasite things on my skin (non chemical) thou of cause the skin thing can be neurological too.
    Last edited by a moderator: Aug 2, 2014
  16. Wildcat

    Wildcat Senior Member

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    @ Cheesus and all (as some were asking about the biopsychosocial model, the BPS):

    The Biopsychosocial Model put into in Practice in Britian (with emphasis on 'the psychological' used as the excuse to deny sickness benefits in national DWP policy):


    “….Unum adapted the biopsychosocial model into a new medical examination that stripped it of its ‘bio’ and ‘social’ aspects in order to concentrate on the ‘psycho’ – with a relentless emphasis on an individual claimant’s beliefs and attitudes…..”




    From UK Mike Sivier’s VOX Political Blog:

    https://mikesivier.wordpress.com/20...-gets-the-blame-for-the-biopsychosocial-saga/

    ‘Unum, Atos, the DWP and the WCA; Who gets the blame for the biopsychosocial saga?’


    ‘Mansel Aylward, former chief medical officer at the Department of Work and Pensions, now director of the (UnumProvident) Centre for Psychosocial and Disability Research at Cardiff University: Architect of misery?

    If we know anything at all about the Work Capability Assessment [WCA] for sickness and disability benefits, we know that it doesn’t work. In fact, it kills. There is a wealth of evidence proving this, and if any readers are in doubt, please take a look at the other article I am publishing today, MPs tell their own Atos horror stories.

    Much has been made of this fact, without properly – in my opinion – addressing why it doesn’t work. The apparent intention is an honourable one – to help people who have been ‘parked’ on disability benefits back into work, if it is now possible for them to take employment again, and to provide support for those who cannot work at all.

    What went wrong?

    Let’s start at the beginning. The WCA is, at least nominally, based on the biopsychosocial model developed by George Engel. He wanted to broaden the way people think about illness, taking into account not only biological factors but psychological and social influences as well. He contended that these non-biological influences may interfere with a patient’s healing process.


    The idea has been developed to suggest that, once identified, the non-biological factors inhibiting healing would be neutralised via a variety of support methods. Stressful events in a person’s life or environmental factors are acknowledged as having real effects on their illness, and it can be seen that this confers a certain amount of legitimacy on symptoms that are not currently explainable by medicine.

    Engel stated, in 1961, “Many illnesses are largely subjective – at least until we as observers discover the parameters and framework within which we can also make objective observations. Hyperparathyroidism… was a purely subjective experience for many patients until we discovered what to look for and which instruments to use in the search.” He also warned that people engaged in research should “see what everyone else has seen and think what nobody else has thought” – as long as they don’t automatically assume that their new thought must be correct.


    The Engels theory forms the basis of the system of insurance claims management adopted by US giant Unum when its bosses realised that their profits were being threatened by falling interest rates – meaning the company’s investments were losing value – and a rise in claims for “subjective illnesses” which had no clear biological markers – Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), Fibromyalgia, Chronic Pain, Multiple Sclerosis, Lyme Disease, even Irritable Bowel Syndrome (IBS).

    As I wrote on Wednesday, Unum adapted the biopsychosocial model into a new medical examination that stripped it of its ‘bio’ and ‘social’ aspects in order to concentrate on the ‘psycho’ – with a relentless emphasis on an individual claimant’s beliefs and attitudes.


    The new test aggressively disputed whether the claimant was ill, questioning illnesses that were “self-reported”, labelling some disabling conditions as “psychological”, and playing up the “subjective” nature of “mental” and “nervous” claims. The thinking behind it was: Sickness is temporary. Illness is a behaviourall the things that people say and do that express and communicate their feelings of being unwell. The degree of this behaviour is dependent on the attitudes and beliefs of the individual, as well as the social context and culture. Illness is a personal choice. In other words: “It’s all in the mind; these people are fit to work.” (as I mentioned in When big business dabbles with welfare; a cautionary tale)



    Already we can see that this is a perversion of Professor Engel’s theory, using it to call an individual’s illness into question, not to treat it. Yet this is the model that was put forward to the Department of Social Security (later the Department of Work and Pensions) by its then-chief medical officer, Mansel Aylward, in tandem with Unum’s then-second vice president, John LoCascio.

    Together they devised a new ‘All Work Test’ that would not actually focus on whether an individual could do their job; instead it would assess their general capacity to work through a series of ‘descriptors’. Decisions on eligibility for benefit would be made by non-medical adjudication officers within the government department, advised by doctors trained by Mr LoCascio. Claimants’ own doctors would be marginalised.

    When New Labour came to power, Mansel Aylward was asked to change the test to reduce the flow of claimants with mental health problems. In came the ‘Personal Capability Assessment’, which again focused on what a person was able to do and how they could be supported back into work.

    It is at this point that US IT corporation Atos Origin (now Atos Healthcare in the UK) became involved. The task of administrating the PCA was contracted out to a company which was taken over by Atos, meaning its employees – who had no medical training – could now assess claims for sickness and disability benefits, using the company’s Logical Integrated Medical Assessment tick-box computer system. These evaluations proved unreliable and the number of successful appeals against decisions skyrocketed.

    So in 2003 the DWP introduced ‘Pathways to Work’, in which claimants – now labelled ‘customers’ – had to undertake a work-focused interview with a personal advisor. If they weren’t screened out by the interview, they would go on to mandatory monthly interviews where they would be encouraged to return to work and discuss work-focused activity. I can assure readers, from personal experience with Mrs Mike, that this activity remains a prominent part of the DWP’s sickness and disability benefit policy.

    Mansel Aylward is no longer at the DWP, though. In 2004 he was appointed director of the UnumProvident Centre for Psychosocial and Disability Research at Cardiff University (it has since dropped the company title from its name). Was this as a reward for services rendered in getting Unum and its practices into the heart of the UK government?..’………

    Unquote.

    .
    Last edited: Aug 3, 2014
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  17. Kina

    Kina Moderation Team Lead

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    Please note, there is a lot off-topic material on this thread.

    Please stay on topic and stick to discussing information related to Jessica Taylor.

    Thank you.

    Kina :)
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  18. Kina

    Kina Moderation Team Lead

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