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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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The Fight is on...Imperial College XMRV Study

Discussion in 'XMRV Research and Replication Studies' started by George, Jan 5, 2010.

  1. froufox

    froufox Senior Member

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    I have never really suffered with pain either all the time that I have been ill - I do get muscles aches after too much exertion but even then I wouldnt describe it as pain as such as its not very acute. I think Ramsey's definition of ME doesnt include pain as a symptom - I seem to fit his criteria pretty well.
  2. valia

    valia Senior Member

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  3. froufox

    froufox Senior Member

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    Hi Valia

    I'm really sorry to hear that your pain is so relentless it sounds absolutely awful. I do think that I'm very luck to not suffer with pain - I get lots of other nasty symptoms but just not that one and I do feel fortunate as I know others who suffer pretty badly with it too. I have lyme too actually but I'm a classic MEer I think the lyme just jumped on board along the way. I hope that you find something to give you some relief very soon. Take care.

  4. valia

    valia Senior Member

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    Thank you froufox, I really thought all those with ME or Lyme or both were just like me, not counting those with fatigue or depression that are thrown into the basket in the UK.
    It makes me think more and more that my illness is Lyme disease, with ME/CFS as a symptom, I am on antibiotics but have reached a platau, I can't afford the more expensive IV stuff.
    Today when out doing my daily 100m walk (pathetic, I know, but I am determined to keep mobile) I was asked for the 4th time in the last 2 weeks "Are you alright Luv" I say I'm fine, I always walk like this, apart from the fact that 90 year olds sail past me on their walkers, I resemble a rag doll trying to walk on deck in a rough sea - can anyone relate to this PLEASE!!!!!
  5. (LOL at your description by the way... so very apt)

    Yes that exact same thing happened to me while I was in hospital!
    For the first time ever in my life, a very seriously ill old lady asked me if I was alright as I tried to cross the ward for the first time to go to the bathroom, shuffling and stumbling like a frail elderly gentleman in a gale.

    I walked into the bathroom wall the other day while trying to go through the door.
    My neurologist described it as 'unusual gait and ataxia' if you want a sort of medical term.

    Rachel xx
  6. Adam

    Adam *****

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    Yes. In short. My gait is disturbed after about 10 to 15 paces. Less if may baseline energy is depleted. Old folk fly past me. I get anything from "were you in an accident luv?" to 'Is it your heart?" after about 50 to 100 paces I slow to a crawl. I never walk quickly as afetr a few steps I too look like a marionette. First time it happened was abour a year before classic viral onset. Still the same 13 yrs later. Never been on any meds except tegretol. You are right to keep mobile Valia. If only the 100 yrds. Or in the house in winter. Pacing for me is everything. Pacing in the hour, the morning, the whole day. I think the thing is with the gait disturbance, you don't see other patients with it and think, it must be something other than ME. I did, I thought it was MS. But they say it isn't. Walking with a stick helps keep you straight. Avoids the emabarssment of people crossing over the street because they think you're rat a***d. How long have you been this way?
  7. valia

    valia Senior Member

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    Thank you Rachel and Adam,

    At least I know I am not in the wrong, place.

    I am from the old the old school “if you don’t use it you’ll loose it” so I persist with walking.

    Hah! Adam.....I wish you could have seen it, I did try a walking stick but it was like trying to coordinate 3 legs instead of 2.

    I think this has been coming on and getting worse for about 18 months, I can only walk holding on to the wall, if anyone comes near me I have to stop and hold on otherwise their motion will take me with them and I fall over.
  8. IamME

    IamME Too sick for an identity

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    Um, no.

    You can also be sectioned if you're considered a danger to yourself. Read up the thread about the psychs view. They think ME is a faulty belief, there's no exertional disease, and that people effectively self-harm through fear avoidance/ deconditioning/ somatisation etc. i.e. they have to be "saved from themselves". Chalder was reknowned for saying to a bedbounnd patient, "you're not in bed because you're sick, you're sick because you're in bed". When Sophia Mirza was sectioned she wasn't fed because the moron nurses thought they could compell her out of it. And the excuse for sectioning her was apparently because she'd refused going into one of the govt's psychosocial fatigue clinics.

    The people who get sectioned are more likely to be severe/bed bound as they are most heavily psychologised (eg. the DLA guidance handbook). It's best not to validate the psychs' myths about sufferers being "frequent attenders" or "fat-file" patients. The reality is that once sufferers see doctors are not only unable to help but actually giving bad advice, obstructing social support and making them feel like sh**, people avoid them like the plague and drop out of the system. Some will have actualy been traumatised by their doctors, as Klimas says. There are even instances where severe sufferers have had their personal assistance threatened because someone in the community (eg. a nurse) started pulling strings and poisoning people against giving any aid to the sufferer.

    When it's kids, it's not sectioning per se but being made a "ward of court" as the parents are blamed for "abusing" their kids by supporting a diagnosis of ME and "encouraging" their wrong behaviour, but it's the same end result.

    None of this has anything to do with the behaviour of patients as if somehow this iatragenic abuse is justified.
  9. IamME

    IamME Too sick for an identity

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    Pain

    Re: Pain.

    The Canadian guidelines rightly say that most people have pain.

    (I don't htink ME is a "terrible" name though not perfect apart from (possivbly) XAND it's the best we've got.
    http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf)

    As Gilliam said in the '30s the muscle pain tends to diminish over time, replaced by rapid muscle weakness. However that's just one type of pain, there can also be joint pain, headache, neck ache, eye pain, stomach/gut pain (re enterovirus?) The reaction to normal light and sound (sometimes touch) could be called a type of pain.

    Clearly, neuropathic pain has been described in hte literature. Many sufferers have severe spinal pain.

    This was all there before the CDC turned the field into a bomb site, splitting one disease into "fatigue"(CFS) and "pain" (fibromyalgia).

    But if it's severe muscle pain, in all four quadrants, late in the illness, it may not be ME/CFS but fibro. In ME the pain is focal and migratory.

    It really does a disservice to ME/CFS to say that if you've got pain it's probably someting else, and I get sick of sources that treat ME, CFS as if it's only or mainly fatigue. The psych#s own drivel states that pain is a predictor of worse outcome for CBT, yet oddly they always forget to mention that whenever they issue a another glowing lionisation of CBT/GET.
  10. Countrygirl

    Countrygirl Senior Member

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    Valia, you take the exact words out of my mouth.....I have bouts when I feel I am walking on a ship's deck in rough seas. I'm never sure where the ground is and don't know how high to lift my leg and foot on level surfaces. As for steps..... To me it is the same sensation that I used to get pre-illness when I had just got onto dry land from a rough boat trip. It took a while for the brain to adjust to the fact that there was no longer a deck rising and dropping away beneath you.
  11. Hi Valia,

    I am not sure you are doing the right thing by continuing to push yourself.
    I have found that if I push myself beyond my physical limits, my condition deteriorates.
    Once I start deteriorating (which - and I know I'm lucky here - I can tell because I start getting the shakes. My whole body jerks and quivers quite badly). Then I know I have to go back to bed and sleeeeeeep.
    Then, I test myself. I walk around a little bit and see how my symptoms are.
    The next day I try to walk a little bit more (unless I know in myself that my symptoms are too bad, in which case I try to be patient.)
    I keep a diary of my symptoms each day so I can see what the general trend is.
    Over the last 4 weeks I've gone from bedridden to being able to walk about 100m each day.

    I'm not sure what the others on this forum would say... but the best advice I have been given is - do 70% of what you feel like you can do.
    I find that most M.E. sufferers are ambitious, bright, driven people, and it's no surprise we try to push ourselves past our limits. But that, it seems to me, is the worst thing you can do.

    Rachel xx
  12. Mithriel

    Mithriel Senior Member

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    Pain is usually a feature of ME, that is what myalgic means. The consultant who diagnosed me said that the Royal Free patients screamed if you touched them. I have had severe incapacitating pain from day one.

    Strangely, fatigue is not a requirement of ME. I had never complained of fatigue or considered it as part of the illness until suddenly CFS was invented and fatigue was the only symptom they spoke about.

    You can't have ME as part of another illness. You can have it as well, but this is a confusion caused by the psychologisers. They use CFS to mean simply fatigue, rather than the Incline Village illness it was meant to describe. From there it is just a step to saying that fibromylagia has CFS as a symptom, as I read the other day in a doctors description, or CFS in MS.

    Then because ME is taken as the same as CFS suddenly our illness is just a symptom in any illness which has fatigue. Then it is so diluted that the epidemics can be forgotten and ignored, "experts" can be amazed that anyone could suggest a virus is involved and they can insist it is a mental health problem caused by childhood trauma.

    Myalgic Encephalomyelitis was a good name. It described what the doctors involved found, especially in the beginning. Remember that CFS is not considered until six months later when the initial illness is long gone.

    There is inflammation everywhere they have looked for it and recent work by MEResearchUK has found it again. CRP is usually raised but it is dismissed because it isn't as high as in autoimmune diseases. I think it may be that our bodies don't react aggressively enough so we mount a weak response to inflammation and it is the response that is usually measured.
  13. Mithriel

    Mithriel Senior Member

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    Lying in bed clinging to it because it feels as if it is a raft in a storm or struggling to walk with the same feeling has been described in ME since before it was mixed up with CFS. I started to use a walking stick so I had a reference for" up".

    Some of these problems are to do with proprioception, the sense we have of our position in space. This is a very under researched part of the nervous system, but I believe it can be a big part of the disability in ME.

    I always touch things. If I have to venture out into open space I walk very slowly with my arms out like a trapeze artist. I hadn't realised how much I did it until I began having episodes of blindness and I was still able to get about in the house - a positive side to everything :Retro smile:

    I have a positive Romberg sign now, I fall over when my eyes close and this makes it worse but I held on to things instinctively for years.

    Mithriel
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    From 1999, but worth a look for those who missed it first time round:

    http://news.bbc.co.uk/1/hi/events/panorama/506549.stm

    Panorama Sick and Tired

    Mathew Hill reported on several families who had experienced what IamME has set out above. At the BBC link, there are clips and a full transcript of the programme.

    -----------

    There will be a Panorama special on the Kay Gilderdale case next Monday, 1 February.

    http://www.bbc.co.uk/programmes/b00qs930

    I Helped My Daughter Die

    Broadcasts

    BBC One | Monday, 1 Feb 2010 20:30

    Next on: | BBC News Channel | Thursday 4 Feb 2010 04:30

    "Synopsis


    What drives a mother to help her child die? For almost a year, Panorama cameras have been following Kay Gilderdale the woman at the centre of the recent Assisted Suicide trial as she faced a possible life sentence over her part in the death of her daughter Lynn.

    She talks exclusively to Jeremy Vine about the night she helped her bedridden daughter kill herself and explores whether the law should be changed with those on both sides of the debate, including Debbie Purdey and Baroness Campbell."


    -------------

    Once broadcast, this will also be available on BBC iPlayer.

    We have this in the Times Letters to the Editor, today:

    Sir, I hope there is a broader cross-section of opinion within the Medical Research Councils expert group on myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) than that expressed by its chairman, Professor Stephen Holgate (Doctors, school, friends thought I was faking it, times2, Jan 25). To say that he recognises theres a real thing here, its not all psychiatric or psychological betrays a lack of understanding of psychological illness that ill serves any practising clinician, let alone one involved in research into ME/CFS. The modern, holistic approach in medical science might almost have been developed with this most puzzling and complex condition in view.

    As a former consultant psychiatrist, I had hoped that this dichotomous thinking regarding diseases of the body and diseases of the mind was confined to earlier generations of doctors. Apparently I was mistaken. Perhaps Professor Holgate would like to tell patients struggling to live with bipolar affective disorder or with schizophrenia that their illnesses are not real. I think he would be unwise to do so.

    Dr Richard Hawley
    Bristol


    and I've just read this blog on the Telegraph site:

    http://blogs.telegraph.co.uk/news/a...igue-syndromeme-can-be-real-and-catastrophic/


    Because I run a website that is carrying links, I'm exposed to all the media coverage and opinion - good and bad. This morning I have never felt such a strong need to punch a hole through a door.

    Suzy
  15. Adam

    Adam *****

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    I think Valia each of us are different in terms of pain and mobility problems but if you read enough posts eventually you will find someone who is 90% like you. At least, that's what I have found. I also think the best advice for managing your illness and getting the most out of life, comes from, of course other sufferers.

    I read some of the horror stories on here re treatment by health professionals and realise how lucky I have been to have a hospital consultant in Infectious Diseases who recognises my illness and has helped in practical matters, like DLA etc. I'm not sure where I'd be today if it wasn't for him.

    About pain; I think it does recede for many once they have got top side of their condition. I was on strong pain killers - DF111 I think, but got off them when I found out they were addictive. What would the Psyche make of that. I just take Ibruprofen, hot baths when in a lot of pain and lay on the bed and do relaxation techniques.

    How long have you been Ill and in pain?

    Adam
  16. coxy

    coxy Senior Member

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    HI, What is the problem with Charles Shepherd, just renewing my membership for the MEassociation, i don't want to be finacially helping the wrong people?
  17. Adam

    Adam *****

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    Thank you for this Suzy. Read the article and comments. Some excellent posts.I'm reall glad several people pointed out that its the media not CFS/ME patients who denigrate psychiatric patients.
  18. Knackered

    Knackered Guest

    Hi Adam.

    How did you get to see this doctor? I'm not too far away from sheffield, how did you get refered?
  19. valia

    valia Senior Member

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    quote thingy not working
    -----------------------------------------------------------------------------------------------------------------------------


    Hi Adam, thank you for your response,

    Sometimes like now I wish I had not posted as I don't feel able to follow up or maintain the conversation

    About pain - I have had constant pain since the day I fell ill, ( by that I mean not 1 minute without it) I call it burning bones, mainly spine and neck, but also arms, hands, legs and feet, my spine feels like a hot poker is in it, when it is aggravated by my movement, the poker is stabbing and being jiggled about, my feet feel burnt and bruised as though walking on hot rough gravel even when I have not walked at all.
    The arm and leg pain is as though they are starved of blood or oxygen (not sure which) then there is the nerve pain which causes sudden dagger like stabs which lift me off my bed as I am sleeping, then there is the buzzing electric current pain which is constant throughout my body. (forgive me, I could go on and on and on about pain)

    on a happy note, I had a burning headache as though my brain was being fried which lasted for 15 months, but completely dissapeard after 6 months of antibiotics, I still get headaches which come and go, but they are more of the normal sort I think
  20. Mithriel

    Mithriel Senior Member

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    I agree Suzy. You wonder what we have ever done to deserve all this. We just got ill.

    Mithriel

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