A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

Welfare Worries: Expert quotes to explain that GP's & Hospital can't help Severe Bedridden patients

Discussion in 'General ME/CFS Discussion' started by Luelma, Mar 21, 2016.

  1. Luelma


    WELFARE ANXIETIES: I urgently need some really robust, pithy quotes that I can print off because I cannot speak - so that I can explain to PIP health visitor and other welfare assessors that my GP & the NHS (neither who i've had contact with for about 3 years)have no answers; are actively more harmful than helpful and that hospital is the very worst place for me. And that lack of 'proof' of many symptoms
    does not mean I (we) are not incredibly seriously ill.

    I'm freaking out about various welfare needs and for ticking assessments (sure I'm not alone). If kind people can deal with reading my verbose personal details below and have any further helpful short, pithy evidence-based expert quotes I can print off to point to when I'm visited or include in correspondence ; council plans for more financial assessments so that the patient has to pay considerably more; that would be most welcome.
    Below is a list of three chief things I'm wondering if anyone can help with:-

    1.) Mainstream conventional medicine does not currently have answers, treatments or medications developed or effective for Severe ME/CFS.
    I'm after short punchy quotes from recognised mainstream clinicians and researchers from the most universally recognised and respected hospitals and,or universities, that drive home, clearly, this fa ...(and, if it exists, that the reason for this is due to lack of research.)

    2.) No medications; biophysiological treatments for Severe ME/CFS. Am I correct that aside from GET & CBT there are no freely, widely available prescription medications specifically for ME/CFS; only medications for symptom management which does not speak to underlying root causes; biological dysfunction. Again any quotes from experts of authoritative sources on this wld be appreciated.

    3.) Expert quotes stating that hosptial can cause real and further unbearable sufferingn to Severe Bedridden ME/CFS patients. If we are to improve - this must be done from home. I'm need of any brief, powerful quotes from expert authorities (really needs to be mainstream as excellent evidence from clinicians working outside the mainstream can be easily dismissed) that clearly state that hospital is NOT the best place for Severely ill CFS patients and that there is a very real danger of further (unbearable) suffering and irrevocable decline taking place even if one is moved in an ambulance etc etc

    (I have a little salient info from the hummingbird foundation http://is.gd/lNdsMq) but I need more that speaks to this important point! (I've written a lot below but I speak more to this where I've capitalised:- GP & HOSPITAL FEARS

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

    Some background: I am 24/7 bedridden (ironically I went from 23hrs a day bedbound to never being able to leave a few days after pushing myself to complete the PIP form which I had to go to extraordinary lengths to be granted an 'extension' on.)

    I cannot speak at all due to chronic severe sore throat & am only able to scrawl notes on a pad and hold them up to be read if I am ' well' enough (this gets tiring v quickly & also one cannot hastily scrawl even one eighth of what one would ever want to say if one cld speak) especially to someone with zero understanding of ME/CFS

    No-one can speak on my behalf and no-one has the first clue about all my symptoms and needs except for me. I have a polish assistant (with very bad English) and other people who do different things (eg someone who changes my sheets - when I'm able to cope and/or am not in throes of agonising migraine or gut pain attack). All this was written in my form but I know we are essentially 'on trial' when begging for welfare mercy; plus becoming permanently bedridden has heightened needs which I'm too exhausted to type up cogently and get printed off ready for the dreaded visitor.

    I live with my 74 yr old father and my very survival is contingent on his being able to bring me food I have prepared off site (he is domestically illiterate and could not cope with my very specific narrow dietary needs (NB my primary and pre-existing lifelong problems are severe and utterly unique gastro problems and it's 50+ hour suicide-inducing gut pain attacks that are the hell above all other hells of my condition - they don't respond to any opiate or other pain meds or therapies. )

    My father has very severe osteoarthritis and badly needs a third hip replacement but due to my ever changing daily eating capabilities and needs and timings; our rural location and other factors; there is no way care for me could be found whilst he was out of action. However my recent deterioration has made his arthritis much worse (he now has a crutch.) He cannot cope with the gravity of my illness and can often take his very understandable fear and overwhelm out on me; and the emotional toll this has been taking on me has been acute.

    I'm trying to think up new ways to lessen his load and need to apply for more assistant care from the council but was recently horrified by a letter saying I'll have to have a new financial review and make higher financial contributions.
    This is stressing me too (I know many are in far worse strait than me so I am mindful of seeming too 'moany' ...but..

    I simply have no choice but to get well because of my father and, of course, because spending 24/7 alone in bed with probably an average of under ten minutes human interaction a day and enduring all the inhuman symptoms is hell!

    I've a professional background in health and nutrition research; have worked with over 85 practitioners based on every continent escort Africa; have seen many gastroenterologists (had all the tests) pain consultants, a haematologist and more but I've had no contact with my GP, or anyone in mainstream medicine for years and for the past year have not been a patient of any health professional at all.

    I'm terrified of being made to have my GP visit because, even when I could speak a bit; his derisive, frustrated treatment was really scarring (I've had nightmares about him and I wasn't nearly so disabled back then.)
    "What are we going to do with you" uttered with an air of profound exasperation highlights the tenor and tone of his treatment. He is obsessed that I "gave up on mainstream" medicine (and even asked for the date I turned my back on it.)
    Dr Myhill (British private GP and CFS specialist) was my first doctor but all her brilliant letters were never taken seriously though prescriptions for things she suggested I try were granted.

    My GP thinks I've been inculcated to detest all things mainstream rather than the more nuanced truth which is that I've tried every darn drug I've been offered for this illness (of course only for symptom management) and responded to none. Other than maybe trying Ampligen (which I'm unclear would ever be prescribed) I know my route to recovery will not be paved with mainstream pharmaceuticals.

    I was with another GP for a while who was obsessed with my being psychiatrically ill (I'm not ) and my current GP's magical answer is just to send me to hospital and have me stay there as though by just being there the holy grail problem and treatment will be found.

    I now have severe POTS (and really cannot sit up for long, or at all. At worst I struggle for breath lying immobile and prostrate where I simultaneously feel like I'm having the life force vacuumed out of me on a loop: a living death. It clicks in a lot of nights and at worst for days or weeks on end.
    I am in no doubt I would enter a permanent living death state if I were merely moved down the corridor let alone out the house and to hospital; where I'd not have access to the foods I need or the silence necessary to try and sleep at odd hours because my night are so broken. I would undoubtedly enter more suicide inducing gut pain attacks and could not cope.

    I also cannot "prove I have POTS" as really discernible cardiac symptom only kicked in after a major decline in summer 2014 by which time I felt too ill and too stressed out to have my GP visit me and have a futile appointment with a cardiologist arranged - something especially dreaded as, by then, I had all but lost the ability to speak and "defend" myself.

    I've spent 13 months putting together a comprehensive health action plan; trying to sort out the best buttons to push without triggering a worsening and finding a way of financing it. I've not totted up the cost but it will run to many thousands, yet the small amount of savings I still have left will be required now simply for me continue to survive by paying for more of my care needs.
    How are any of us to ever get well if we're not multi-millionaires?

    I know many are a great deal financially worse off than me but how can we fund our basic right of attempting to regain a viable, pain-free life with any quality at all, if we're to be asked to pay even more for the most rudimentary basic survival care. My council is holding meetings which I obviously can't go to about this, but I am so shattered by symptoms I can't concisely formalise or relay just why - by being forced to pay a lot more for essential survival care - one is being robbed of a chance to escape the purgatory of this illness....again, any suggestions as to what to say much welcomed.

    I feel very exercised about this and if I could just improve a bit I would like to write about this. Ideally we need to collate good independent evidence that details just how much - on average - we need to spend on a monthly basis on treatments aimed at giving us a hope of recovery.

    (as these are often classed as supplements it's hard for officialdom to take these seriously) to try and recover.
    MeSci and green_monster like this.
  2. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    I don't have any additions for you. You may get something you can use from one of Jaime's 2 excellent docs.

    Myalgic encephalomyelitis: a multi-system disorder Myalgic encephalomyelitis, or ME, is a disorder classified as a neurological...

    or : an even shorter note for your actually-interested doctor To give you a sweeping generalization of the currently competing...
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    Kati and green_monster like this.
  4. silverspeck


    From the National Institutes of Health:

    From a 2014 article in Stanford Medicine magazine:

    And here are two sites illustrating how hard it is to get funding for ME/CFS research. Both sites ask(ed) for donations.

    The End ME/CFS Project: a collaborative research project led by world-renowned geneticist Ronald W. Davis, PhD, professor of Biochemistry and Genetics at Stanford University School of Medicine.

    The Microbe Discovery Project (crowdfund complete): research project led by world-renowned microbe hunter W. Ian Lipkin, MD, John Snow Professor of Epidemiology at the Mailman School of Public Health at Columbia University, Professor of Neurology and Pathology at College of Physicians and Surgeons at Columbia University, and Director of the Center for Infection and Immunity at Columbia University.
    actup likes this.
  5. silverspeck


    Some quotes I pulled for you from the Institute of Medicine's report on ME/CFS. Some of it is redundant so just pick out the ones you like most. I highlighted in purple the quotes I personally liked best.

    It's hard to find quotes from mainstream experts about severe bedridden ME/CFS patients because most of them only see the ones who are functional enough to make it into their clinics. But you might want to look up Ronald W. Davis, PhD (who I mentioned earlier), as his son, Whitney Dafoe, has a very severe case of ME/CFS. He had to go to the hospital for a procedure a couple of months ago and his sister wrote a brief message about it on Facebook.
    Hope this helps.
    Last edited: Mar 22, 2016
    actup likes this.

See more popular forum discussions.

Share This Page