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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Severe ME/CFS could be called Pervasive refusal syndrome

Discussion in 'General ME/CFS Discussion' started by taniaaust1, Feb 13, 2014.

  1. taniaaust1

    taniaaust1

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    I just looked up what the following supposively is, seeing its the diagnoses psychs who have holding Karina hostage in hospital have given her this diagnoses http://en.wikipedia.org/wiki/Pervasive_refusal_syndrome . Looks like the psychs are having a field day with this fairly new diagnoses (which we can only hope doesnt become common).

    • umm so what is the difference between this newish psych disorder and CFS diagnoses? anything? I think we all should be concerned about this psych diagnosis. (It commonlly takes up to 13-15 years for something new to be accepted in medical circles.. so maybe we will be seeing more of this)
    So the psychs have covered the viral infection angle too and that wont rule a person out.. created a new mental health disorder which starts with an viral infection.
    Very interesting that they are now blaming those things for mental health disorders!! This is soo crazy. Where are the psychs going too stop?
    Im worried about the IOM stuff and now I see this diagnoses being used to detain people.. very very scary.
    So in other words any severe ME person may fit all that as often those who are trying to help may be hurting the person who movement, light, sound or other things may be too much at times esp if the person trying to help dont understand at all.

    Are others here as outraged by this as I am.... I fear for the young severe ME ones or ones who got ME while children, with crazy diagnoses like this around, for a psych to be able to label them with so they become then severe mental health patients needing hospitalization. Even the fact when someone is hospitalized and dont get well... well the psychs have that covered too.

    So young ME patients unfortunately given this label.. could be made to stay in hospital for a very very long time!!
     
    Last edited: Feb 13, 2014
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  2. SilverbladeTE

    SilverbladeTE Senior Member

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    yes and somehow it kills them when excessive by making their immune systems go so hyper it tears them apart and is on death certificates

    F*** THESE SONS OF BITCHES
    sorry, nicey nicey has not worked: patient rebellion, lawsuits, CRIMINAL lawsuits are required
     
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  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    It is a lottery. Depending on when and especially where you get ill, either you get proper treatment, get dumped in some psychiatric ward/awful hospital/stay in home but forced to psych medicate and over exert... or whatever thing in the middle of those two extremes.

    I am in the middle, towards proper treatment, but only because of me, no one ever really helped, even if they wanted, ESPECIALLY doctors. Most of people that had bad luck we will never know about them in forums. Psychiatrists and psychologists are really a filthy race. And so damn expensive!! Right now my parents are forcing me to go to one of them only to see in his face how much he believes my digestive, sleep and other symptoms are psychosomatic. And it costs 96 dollars per sesion/week. At least they also pay my supplements. Yay!
     
    Last edited by a moderator: Feb 13, 2014
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  4. vamah

    vamah Senior Member

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    WTF is "fatal mothering"?
     
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  5. Izola

    Izola Senior Member

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    Tania: These jerks are nothing but psychopaths. They are the ones who should be detained. One doesn't do to people what they've done with out a serious and criminal psychopathology.


    Tania: These jerks are nothing but psychopaths. They are the ones who should be detained. One doesn't do to people what they've done with out a serious and criminal psychopathology.

    SilverBlade: I so agree why are some most of us being so nicey nicey.
     
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  6. Izola

    Izola Senior Member

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    :devil::nerd:
     
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  7. Countrygirl

    Countrygirl Senior Member

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    I was told a couple of years ago by a doctor-friend who works for the DWP that, on the notes she is sent from the department, that they have changed applicants' reported ME diagnosis to one of PRS and the doctor has been instructed to write his/her report favouring a psychiatric aetiology, so benefit can be denied. A doctor who fails to sell their soul is punished with repeated orders to attend 'a naughty doctor in-service training course' miles from home where they may be the only attendee. Repeatedly! It they persist in their determination to write accurate reports, a minor administrative error can be used to sack them.........as has happened.

    C.G.
     
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  8. Izola

    Izola Senior Member

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    Tania: :)You already have a diagnosis. I'm not a doctor, , but I don't think they can come back and change it to psychiatric, not with all the physical things that happen with you, Iz
    Don't be sorry. You have reason for your anger. I had to switch my post the other day to a word pad I was so angry. I wrote angry out the entire afternoon. I wish there were a way to bring a world lawsuit against the SOB's who rob children of their lives. The bastards. We will eventually win. I may not be around to see it but my spirit will be with you all.

    I'm glad to see you are back posting. :) I think I messed the posts up again. Some things just don't work for me!!!

    I'll see you later, Tania, Silverblade, Beyond, Vamah, Country girl and all. Its time to finish up and go to sleep. Iz (I think I broke this thing. oOPS.)
     
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    "Fatal Mothering"?! I'd rip the BALLS OFF

    My mum was left crippled in agony because the NHS used an X-ray dye for spinal cord xrays they KNEW was toxic. KNEW caused arachnoyditis
    She had more guts and balls than almost any Man I ever knew. She was so brave, compassionate and kind, it was privilege to be her son.

    another little story of real life

    Before mum died she told me things which like anyone they keep secret until such times

    I already knew she was furious at way the high school had covered up the outrageous incident when I was attacked by scumbags, 5 of 'em, I put two in hospital when they came at me with fence poles (British folk may realize who dangerous they are, 3' long 2" wide split from poles they are triangles so unlike a baseball bat, they have three edges, they can smash bone, trust me they hurt)

    rector was snob, wanted to keep it all secret so he threatened to accuse ME of starting it if I didn't drop the police case. but I'd informed cops first. they knew these vermin, several later got jailed for other stuff. one of their acts was when two gay lads were found kissing, they put them in a big industrial bin at the school, set fire to it...they'd have died if they also hadn't pushed it down a hill so it fell over.
    and many years later I found out one of 'em and another creep later convicted of paedophilia had tried to rape my cousin and his pal, if I had know THAT that scum wouldn't have walked away.

    anyway, back when I was 10 or 11, primary school, a scumbag pulled knife on me demanding my pocket money, so I decked him, only person I ever punched, panned his face in (years later he got 8 years for attempted murder, him and two other gangsters kicked my pal to his insides burst)

    so what Mum had kept quiet about for years was the primary school had also pushed ot keep this hushed up, as their "reputation" was more important that having an actual psychopathic-type diagnosed and maybe treated before he became an actual, real gangster. Typical! (I got crap cause I was a "brainiac", nerd, gentle and had pointed ears...sigh)
    So just like at high school, they'd cover up to save their pathetic reputation..and really, their pensions or whatever.
    Stuff I've heard much later on suggests rape and such were also covered up as well at primary and high school..and you see such most definitely in the private education system many of these psychiatrists/upper middle class types go to, where child abuse is rampant.
    No wonder *they* are sick in the head.

    (I won't watch most gangster things on TV/film, ones I've know, things they did, utterly vile, nothing to look up to, no skill, just vicious horrible nihilistic thuggery. No idea why folk seem to worship that kind, where as safe crackers who harm no one have skill)

    my experiences with Human "systems/groups" is most of 'em tend to VERMIN, STUPIDITY, COWARDICE, GREED AND GUTLESS, PATHETIC MALICE!
    M.E. experience just proves this! :/
    My mum literally saved lives (nurse and afterwards as healer and general all round good person), without her and other decent folk in my family God knows what I might have become...a psychiatrist who ate other psychiatrists' livers with some cianti, perhaps! :nervous: o_O :p
     
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  10. Izola

    Izola Senior Member

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    Silverblade: Holy Shit. :aghhh: You've been through so damn much Hell:devil:. You still have your gentile nature. Spock has pointy ears and so does my grandson. And he is the most beautiful gentle kid.

    He's also been through a lot. The court gave his dad visitation and his dad beat the holy shit out of him. My daughter and he were brave and battled the court system, which is as often broken, as not, it sometimes seems,

    Did you grow up in Glasgow? What a rough neighborhood you had. No one came at me with wooden weapons. I got into a few scratching and hair pulling fights. I would have been scared all the time at your school.

    Your mother was kind and gentle. I bet she was taught not to buck the system. You did have her as a good and kind mother so no chianti and Favah beans for you.

    Psychiatrists would spoil the stew. :D I had to go to one to get my disability pension. If they could prove my illness was psychiatric and not physical they would only have to pay for 2 years. That was back when no one knew much of anything about M,E, I was a little scared. Thank goodness I passed my psychiatric exam. I don't think he was quite like those in Scotland.

    What can be done to make things better? There should be no room in society for Psychiatrist, bad schoolmasters and thugs. I'm being summoned so I'll catch you when we're both on line. Iz
     
    Last edited: Feb 13, 2014
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  11. Sparrow

    Sparrow Senior Member

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    Not all psychiatrists are so severely misguided, but this is ridiculous. Yet another evolution of the same old attempts to explain our symptoms as mental illness.

    They come at our illness from the perspective that if there isn't yet a discovered test that reliably and incontestably identifies patients with a particular illness, and we don't yet have definitive understanding and proof of what the underlying mechanism is, then that illness must be psychiatric. Period. It doesn't matter to them what the symptoms are or how unlikely that may be. And then, of course, from that perspective they come up with all kinds of possible explanations of what might be going on from a psychiatric perspective.

    But the fact is that when you're presented with an illness that has extreme physical symptoms and very strong similarities with other physical illnesses, and no signs of mental illness, it is vastly more likely that the illness is physical. It is far more likely that there is a physical cause we just haven't identified yet than that we have some kind of new and very unusual super elabourate mental problem.

    They're hearing hoof beats and instead of a horse, they're trying to explain them with a shape-shifting creature who just looks like a horse and smells like a horse and which jockeys and ranchers believe to be a horse, but must obviously be a magical imaginary childhood trauma beast. It goes against good medicine.

    Eventually the truth will come out. It tends to do that. Someday there will be answers and no further argument or confusion about what type of illness we have. But it saddens me greatly that until that day, people in some parts of the world need to suffer this kind of thing on top of what is already in itself a devastating loss and challenge.
     
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  12. Izola

    Izola Senior Member

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    Sparrow: From what I hear there is quite a bit of madness. They must be sending low IQ scoring students to psychiatric Colleges. I can't imagine a whole country of psychiatrists all playing follow the leader.

    We are getting closer to our illness being revealed for what it really is. A lot of lives were ruined in the process. There is hope out there.

    I like your poetic style of writing. It brings really vivid pictures to mind.

    I have to go. My right arm goes numb and stupid. It came along with the disease. I had to shift my 5 speed with my right arm. We drive on the wrong side of the street here so that was a real feat. A lot of people in western Arizona lost the use of their right arms, I read. oOPS. You are in Canada, a place where often want to move to. What side of the treet do you drive on? Just curious.

    Are all shrinks crazy?

    Take care. See you on the back side. Iz
     
  13. jimbob

    jimbob ME/CFS84-XMRV+

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    "Fatal Mothering", Are they trying to push Munchausen by Proxy? Things are getting totally insane! I wish I could travel back to the eighty's when ME/CFS was treated with at least some respect.
     
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  14. Izola

    Izola Senior Member

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    I keep hearing about fatal mothering. What's that all about? Or are they trying to pawn the blame for this disease off on mothers?
    My arm is really hurting and non functional so I have to go. Take care. Iz
     
  15. Sparrow

    Sparrow Senior Member

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    We drive on the right side. I love my country. Needs a kick in the pants when it comes to ME, just like everywhere else, but otherwise it's pretty great.

    There is a saying for new medical students that if they hear hoof beats, look for horses, not zebras (because it is probably the obvious answer, not some super rare weird illness). The psychiatric explanations of ME are a zebra of epic proportions.
     
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  16. Izola

    Izola Senior Member

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    I'm going to ery to put this into private conversation if you don't mind
     
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  17. Izola

    Izola Senior Member

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    Silverblade: I tried to put out posts in "conversation" but I couldn't do it. I assume you have gone on to other things. If I don't sleep in 5 minutes my brain will burst. I'll be back posting after hibernation. Iz
     
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  18. Sparrow

    Sparrow Senior Member

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    Another point to be made is that even from their perspective, the only research that has showed any kind of mental illness connection with CFS (in their opinion, which is highly debatable anyway for other reasons) was made using patients with no neurological symptoms and who were well enough to walk, etc. Other patients were excluded from the research, as were patients who dropped out of the study due to adverse effects on their health.

    One cannot then turn around and apply these interventions to that exact group of excluded patients and then claim that there is research to support the decision. It is irresponsible, and goes against the evidence-based approach that they claim to be upholding.

    There is no evidence whatsoever that those interventions are helpful for severe ME. Not a shred. Even ignoring how badly interpreted and slanted results have been.
     
  19. Legendrew

    Legendrew Content team

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    what an awfully misguided diagnosis, I think we'll look back in the future with wonderment of how such things were even considered to be legitimate diagnoses.
     
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  20. SilverbladeTE

    SilverbladeTE Senior Member

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    send a private message when yer able, no worries :)

    and on this whole thing

    logic 101

    • Sophia Mirza died because they sectioned her
    • stressed her, fed her psychiatric drugs etc
    • all of which sent her M.E. through the roof
    • they refused to accept her body was having an immune reaction against damn near everything
    • yet even in coma that occurred this continued until she died, so it CAN'T be psychological when she's in a bloody COMA, dying!
    this is hard fact
    it has been seen in other M,E. patients in extremis


    these psychs are vicious cowardly stupid SCUM, this kind of crap should have died out in the 1800s
    it is witch hunting, gas lighting, superstitious voodoo BULLSHIT

    if we knew everything, we wouldn't bloody NEED Science, we keep fidning new stuff all the time
    this shit is about their ego, it will be THEIR WAY regardless of any costs
    like it or damn not they *ARE* modern day Dr Josef Mengele's: sadistic evil bastards who's lunatic egotistical crap sanctions ANY nutty atrocity
    god help patients as our societies slip ever more into fascist tyrannies, the loss of compassion and brakes on extremism will lead to horror. when that happens, Mengele's are let to run rampant in any horror

    I posted elsewhere some of the atomic test footage of way they behaved towards the native peoples "savages"...VD experiments (Tuskegee and South AMerica), injecting plutonium into people even pregnant women, that crap really occurred. Doctors did that. *face palm*

    Fact that the bloody department of work and pensions interferes with doctors on M.E. in the UK is hard proof this is IDEOLOGICAL, MONETARY, POWER DRIVEN

    Nuremberg Trial for the gits.
     
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