The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Video from Milly Garnier - What is it like to have ME?

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Apr 14, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    Last edited: Apr 14, 2016
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  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    A well intentioned video but it's way off the mark for ME.

    If it didn't mention ME, I'd ignore it. But as it did, I cannot and have to correct multiple, factual problems.

    This is not the fault of the individual, but the system. Clearly the individual hasn't been bedridden for 20 years with severe ME if they did, they wouldn't make that kind of video, not that it's 'wrong', it's actually 'right' for a government explanation of the illness called CFS/ME, which the MRC and NICE represent, although it's not representative of crippling neuroinfammatory ME, which the MRC and NICE don't represent (they green lighted the PACE trial and CBT/GET respectively) because they are referring to chronic fatigue, as ''ME''. Hence, we're in the mess we're in now.

    This is the Department of Health's fault (DOH) grouping people with fatiguing illnesses in with ME (medical authorities decision), not the patients. I want to make that absolutely clear, that patients are not masters of their own destiny with ME CFS - policy and politicians have decided their fate on their behalf.

    For British CFS/ME (Fukuda CFS but 1 symptom + PEM) it's actually quite a good little video however it was entitled 'A little story about 'M.E'.

    And here lies the problem.........

    1) The video says ME can ''come and go'', but then lists ''1-6 months''. Firstly CFS/ME, cannot be diagnosed until 6 months has passed (meaning the least it could last would be 6 months and, 1 day if a day after diagnosis a miracle occurred and the patient was 100% cured). Secondly, ME doesn't come and go, it's a chronic disease not a syndrome.

    A small percentage of people diagnosed with ME CFS, however, report complete resolution in the first year, they are a tiny percentage though and to my knowledge no one on planet earth has shown the damage long term ME causes and been spontaneously ''cured' 100%. Ergo, ME does not 'come and go', but in some subsets it can fluctuate, and in others it is progressive and fatal. (like MS)I notice the video didn't mention that and it should do if it's about ME. NB: The start of the video does say: '''A little story about 'M.E'.


    Curious comments in the video:

    1)
    ''The NICE people at NICE''.

    I guess that was a joke in the video? NICE and infamous at producing the appalling 'NICE Guidelines' on CFS/ME in the UK, a guideline that has helped and continues to destroy people with severe ME and severe CFS's lives, by
    backing the fraudulent (non scientific evidence), therapies of CBT/GET and the Wessely School. I wouldn't call that ''nice'', more like something from a horror film.

    2)
    There is NO SCIENTIFIC OBJECTIVE EVIDENCE that ME is managed by Pacing. I imagine the well intentioned video creator was disinformed by the NICE guidelines or some other source. Pacing is simple common sense behaviour. Any illness or disease, the patient should 'pace' their life. It is thus not a treatment, but normal common sense psychological behaviour. ME, the symptoms are at rest. Unlike with the proposed SEID, in ME you can sit on the sofa or be forced to your bed, an you still have crippling symptoms - hence Pacing doesn't ''work'' for ME, as it doesn't work for any other disease either. (Pacing is not a treatment for MS, Parkinson's, ALS either).

    There is no Scientific, objective evidence that ME is managed by Structured Routine with a Set Bedtime + with '' Good work/rest, and 'regulated exercise''. Again, I imagine the well informed video creator was disinformed by the NICE guidelines or some other source again. Indeed ,the above beliefs ('boom and bust' theory) usually comes out of Kings College Chronic Fatigue unit and Trudie Chalder way of thinking about Chronic Fatigue, which not ME.

    For example:

    3)
    Sleep. ME will always destroys sleep due to:

    Vertigo + positional Vertigo
    Breathing difficulty (worsened by laying flat)
    Neuropathic pain including Myofacial, Allodynia and Trigeminal Neuralgia (as in MS).
    Chronic Infections (temperature, chills, myalgia, feeling flu like)
    Asthma/Allergies
    Nocturia (excessive peeing at night). By excessive I mean 2-3 litres of urine overnight. Try sleeping with that.
    Anxiety/Panic Attacks.
    Nausea
    Confusion.
    Paroxsymal Nocturnal Cardiac Arrythmia (waking up with extreme heart rates, S.O.B, fainting or near fainting).
    Seizures + Partial Seizures (very scary), all over body shaking,



    As PWME know, none of the above signs of ME, respond to CBT/GET and none of the above response to PACING - what NICE claim is 'evidence based'.

    The concept that someone with ME can have a 'set bed time' in the video is inaccurate, due to the fact the above problems with sleep are simply part of have an untreatable multi systemic disease, hence the symptoms are out of control due to no treatments being available, as there are no tests to monitor the disease, as Science doesn't know what ME is yet. That's not my opinion, it's scientific fact.

    4)
    Friends? I can't have any friends, or see anyone (including family). The few people I've met years ago, all live a life like me, they live like hermits and have aged 20/30 years since teenagers in the 1980's and 1990's. It's very upsetting to hear other people claim that friends are possible when you have severe ME. Sorry, they aren't.

    You can't have any social contact (friends) with severe ME, as you:

    1) Too much in pain to converse/speak on phone or in person. (feeling dizzy, unreal, lose your train of thought), out of breath etc.
    2) Too exhausted to write with a pen to new people who want to get to know you.
    3) Too sick to keep up new contact, (even if you do make a new friend so you then lose contact with new people!).
    4) Or if you do the above, it RELAPSES you for days or weeks, thus keeping in contact never works, especially with Boyfriends/Girlfriends. RELAPSE is not Fatigue, it is NEUROLOGICAL SYMPTOMS, that can be observed by other people:

    Palor
    Droopy Eyes or Panda Eyes
    Migraines/Photophobia/Sound sensitivity worsens
    Twitching Eyelids
    Vertigo
    Muscle weakness
    Slowed or weakened speech.

    (None of the above are FATIGUE based PEM), but neurological reaction. I've seen this myself in people with other neurological diseases and autoimmune diseases who go walking/dancing/shopping, or get an infection e.g Lupus.


    With no social contact, when you're young this is really bad, when your older, and decades have past, it's more than really bad it's a ruined life. With severe ME no one cares if you're alive or dead, and usually your own family, because they read the Wessely School articles in the press and believe it to be true, they believe the press, not you.

    These opportunities of youth are lost and you cannot have them back.


    5) Feel stoned/drunk/dissociated from reality and the more you talk, the more your symptoms worsen.

    Ergo, I have no friends now (progressively ill), and the only people I've spoken to also have severe ME and can't get back to me, as they're also too ill to speak on the phone or write to me as well!!!!! . Ergo, the idea you can be ''supportive'', ''patient'', ''kind'' is obvious, but impossible to pull off if you have chronic severe ME.

    The video suggests with your friends:.......

    ''Sing them a song, dance them a dance''

    In reality people with severe ME have trouble urinating in a bottle in bed,swallowing, and breathing never mind singing and dancing.

    For example:

    The girls I've met in the past with ME can't even put on make up or wash their long hair (forced to have their hair cut off actually as they can't even have their hair dipped in a bowl hanging off the end of the bed - too dizzy or weak), never mind chat up boys or look nice for people when they come around to have 'friends'. To men this might sound nothing, but to women, especially younger women, long hair is part of their sexual identity. That is then lost, along with everything else due to having ME.

    So the video for severe ME is not representative of the disease whatsoever. In contrast, I'm sure AYME/AFME love it, as it paints a jolly picture of a life destroying disease that is nothing to do with Chronic Fatigue, PEM and one symptom (British CFS/ME), but more to do with Neuropathic Pain, Autonomic Dysfunction, Multiple Allergies, and Chronic Intracellular infections.

    So we are silenced in all ways. For example, if I made a video on how ME really affects my ife and others like me, AFME/AYME would run away, and everyone experienced in their policies of supporting CBT/GET knows why. Infact I'd worry even the ME Association might ban me from their Facebook page too (I don't have Facebook due to trolls posting 'recovery' stories with psychotherapy infuriating me when the disease remains incurable globally, even to millionaires and billionaires like UK's John Caudwell - 11 of his family members test positive for Borrelia including his ex-wives and his daughters boyfriend).

    The people with severe ME are a minority within the CFS community, as their experience (20% or less) is clearly alien to the people who don't have ME but have a fatiguing illness like Fukuda CFS, or what the British foolishly created as ''CFS/ME''.

    So all in all, we end up with happiness representing misery and ironically, all unintentionally and with good intentions.

    This is the tragic hallmark of heterogeneous chronic fatigue states, misrepresenting ME, because the medical profession chose this line of history, not the patients. (The patients were forced into misrepresenting each other, unintentionally).

    The only people who benefit are the psychiatric profession, insurance industry and governments who don't want to pay out long term disability payments to people crippled by severe life long ME.

    Be it 1988 or, 2018 we are experiencing a human tragedy caused by humans -social psychiatry seducing socialised heath care systems. Cost effective tax payer funded systems who then dish out CBT/GET/Pacing as if it was in any way relevant to post infectious brain autoimmune disease - ME).
     
    Last edited: Apr 14, 2016
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  3. BurnA

    BurnA Senior Member

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    I think it would be great if you did make a video. I think it would be great if we all made videos, let's say 1 -2 min max, and post them on a dedicated website. Then whenever anyone wants to know is what it's like we can just direct them to the website.
     
    Mel9 likes this.
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thanks BurnA, I'd love to and to see others too rather than just usernames of text.

    I really like your idea about having a 'reference' website (original idea) so we don't have to spend our precious energy (and emotion) having to describe severe ME to people who believe we are simply managed with Pacing or other therapies that won't work for people who have many co-morbidities (seizures, pituitary disease, cancer etc) due to being sick for so long, and getting a severe form of the condition that flood into about 5+ chronic ailments as the decades roll by.

    It's very strange I exist on this forum as a human but not outside of it, even in my own house. Do other people experience this? Even in your own home your disease is censored due to shame and embarrassment or disbelief from the family? It's a horrible existence and made worse by no social contact (real contact with voice, touch etc) with other humans. I worry about the low term psychological effects of this, about feeling hated by so many people (not just British Psychiatrists) that when you hit 50 or 60 how sad will your life actually have been? All this time lost, and for nothing but greed and power about those who refuse to accept 'CFS' is not psychological and ME does exist for some. :(

    As we all know, the more disabled we get, the less we can contact each other. As severe grade, you then feel like a sub species alien, even when you 'meet' (virtually) other people in the form of text. I always worry about typing here, I always feel physically ill reading people freaking out at me, because my disease put me in this situation - not myself.
    Then you realise you are one of millions feeling this, all of us are thrown to the wolves. Ironically, there is a positive aspect to this, potentially we could all make some great friends with ME CFS - if we could get to know each other.

    If only forums had webcams, or some kind of friends way to contact people that was validated and safe. But even if they did, the severe grade won't be able to take part much in multiple groups of 'chat room' people talking at once ,if at all even one to one.

    The disease is so ghastly, it robs us of practically all individuality, identity and independence and that's what people need to know, not a happy smiley picture (for one subset). All subsets should be recognised for ME CFS and shown to the media (press) and each other. It's quite crazy only the more mobile people are the spokespersons, although logical of course, as they have more strength.

    I'd love to know other people and don't know anyone, but how can we meet each other anyway if we're all too ill to do anything consistently, ,or just in tiny bursts and then we go 'missing' for months or years at a time.

    :cry:

    To me that's what it's like to have ME. The reality of the situation, is dire and all we have is each other, but when I say that, I mean people with our level of understanding of our disabilities and symptoms, not just a diagnosis of ME CFS.

    So far, the people who have understood me best, don't have a diagnosis of ME CFS, and that shows had poorly diagnosed ME CFS is. Too easy to join the club, and with no tests, no way to validate any of us even share the same condition.

    Living with ME, is like experiencing something invented from hell. That's my view anyway, I know many would disagree and say they are happy and have great friends and support. The question is, what about those who don't.

    I don't worry just about myself, I worry for other people. I worry for the people who would read this, agree, but can't even speak. What about these poor people. :depressed:. And that's what needs to be promoted. The stark reality, and the truth.

    Peace. X
     

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