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Horrifying article in Sunday Times

Discussion in 'General ME/CFS News' started by MeSci, May 5, 2013.

  1. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland

    no but we got this few years ago, "Chrisitans" praying before the Golden Bull in Wall Street to make the economy recover....
    think they skipped out ENTIRELY on what Moses and Jesus said, don't ya think? :p

    christians goldn bull.jpg

    I consider myself "Christian" but nitwits like those have made that term very very....problematical, for millennia, sigh
     
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  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The same thing occurred to me this week as analogous to...can't remember what. People who claim to be something but the original concept has become distorted so much that they are the opposite. 'Christians' who hate their neighbours, judge everyone and accumulate wealth. Wish I could remember the association with ME!
     
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  3. Firestormm

    Firestormm Guest

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    Published letters (taken from MEA FAcebook):

    From Sunday Times 12th May 2013

     
  4. taniaaust1

    taniaaust1

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    the issue is we need all those people focused on their patients and research.. not spending say a quarter of their time fighting what is going on. Its only by good research which is then backed by others, will we ever be free of the mess . Let our researchers focus on their fields.. the research.
     
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  5. taniaaust1

    taniaaust1

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    Bob.. I think when he said that part about his patients finding patient groups threatening. I think he was rather refering to say patient groups like PR or other patient groups about the place, I dont think he was refering to any patient groups he runs.
     
  6. Bob

    Bob

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    Ah, yes, I agree with you. It seems that I misread that. Thanks Tania, I'll amend my post.
     
  7. taniaaust1

    taniaaust1

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    So true. Something very bad happened where I live... all the fish started dying and were being washed up on many beaches, something like 26? dolphins also washed up dead. I got a lift to the local beach only a few minutes away from my house to check it out for myself (this was after they'd done an offical clean up of the dead fish). It was heartbreaking.. the beach was still littered in baby fish, hundreds and hundreds of them all species with some bigger fish there still too (whiting, gar, reef, thousands of leather jackets etc), every inch or two of that beach was a dead fish, some a ruler length in size (I'd hate to know what it looked like before they did the clean up of it).

    Immediately when this started happening the local authorities tried to calm people down by giving out answers (even thou they didnt have a clue as no testing had been done.. the authorities never told the truth and were unwilling to admit they didnt know). Instead we got told some almost laughable lies.. (makes one wonder how dumb the authories think the general public is).

    First we got told.. the sea had been rough the day before and killed all the fish (it really appeared no rougher then normal)... when the issue continued for the next 5 days and fish were washing up on more and more beaches up the coast.. then we got told the sea water was warmer then normal and killing them due to that, when that story wasnt washing with the public the next one the authorities gave was .. algae in the water killing them (interesting thou if the authorities really believed that that they never put a ban on swimming here so people were swimming where there was supposively toxic algae killing all the fish so from that alone it was an obvious LIE). Then the dolphins started dying (it was only at that point probably due to public outrage/protest did the authorities start to say they were doing testing).

    The latest story we've been given is they have just found a virus which has never been see in my state before in 2 of the dead dolphins one which was a baby.. and they are still saying the fish all died for a different reason.. the algae for those. umm strange isnt it that all these fish and dolphin deaths occurring within a matter of a couple of weeks with the fish still dying but are supposely different causes, rather very coincidental that one would be. So I believe they are still lying. (found the virus in 2 of the dolphins in over 20 dead dolpins umm.. if it killed them all...wouldnt it have been found in them all?)

    Who knows..but one thing we can be sure of is authorities LIE.. they dont care about if what they say is true or not.. they just dont want any issues, they'll just play down issues and hope they will just go away. (in the case here.. possibly the new desalination plant which the gov did and put lot of money into could be the cause, it was in that location the first fish deaths happened spreading up the coast line from there).
     
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Tania
    usually the most likely cause for such IS algae, but those can be incredibly toxic, all beaches etc should be shut down, bans on fishing/eating fish/shellfish
    it's unlikely for a virus to kill so many *different* species

    another possibility is poison run off in a river from a factory or such
    note also that poison but more often fertilizers can cause "anoxia", sucking the oxygen right out of the water killing most marine life, and THAT can trigger a very deadly algael bloom as anerobic bacteria/algae are often the most toxic of all
    but hey that'd be "big business" and we peons aren't allowed to have them in front of a court for pollution...

    actually sometimes the toxins are so bad, or the decomposition of algae can be deadly ON shore, and such should be very seriously avoided
    French person died last year form such as the rotting algae created by huge amounts of fertilizer run off into the sea released hydrogen sulphide gas which is actually extremely poisonous

    radiation is another possibility but usually that creates terrible sores on the dead as it's hellish death
    and Geiger counters cannot pick up alpha emitters like Plutonium
     
  9. Barry Savage

    Barry Savage

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    In 1991, I was diagnosed with ME by Dr. Simon Wessely at the Maudsley Hospital. Before that I'd received a diagnosis from Dr William Weir at the Royal Free Hospital. At the time of diagnosis I owned two companies,I had employees and family members dependent on me, about 40 persons in all, not counting their dependents, customers etc.

    The diagnosis ME was worse than no diagnosis at all. It makes the disability much worse. It creates antipathy in doctors and laymen - to them ME means MALINGERER or MUNCHHAUSEN. My GP has used both these terms. It leaves me no creditable explanation for my behaviour. I am still expected to be able to do what other people can do. It makes me into a recluse.

    No treatment has been offered. Treatment has been refused for illnesses obviously not ME - hypertension, for example. The only treatments I ever received has been abuse and derision - no kidding - no exaggeration - and that has discouraged me from seeking medical help for anything. If the purpose was to shut me up, then it worked.

    No doctor ever asked me to describe my symptoms, nor was willing to listen to me for five minutes, nor performed any tests that weren't routine eliminations. In fact, nobody ever studied me. I suppose the same applies to all the others.

    My life was ruined by the incompetence induced by the illness. I can't hold the medical profession to blame for that. But I do hold them to blame for calling me a liar without proof: I think I deserved an investigation and a fair trial.

    Barry Savage
     
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  10. Enid

    Enid Senior Member

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    I am sorry to hear Barry having had a "run in" with Docs (not my Neurologist) and a psychiatrist myself ten years ago. The situation in the UK and ignorance persists (wilfully it seems) still. It beggars belief that one can be unable to walk, pass out, be unable to speak, sleep mostly and yet be denied recognition and proper (real) medical investigation and aid from those who should know. I do blame the Docs for not keeping abreast with considerable advance in the revelation of pathologies involved even pathogens to look for then and so much more now. And of course as you say, suggesting one is a liar.
     
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  11. ukxmrv

    ukxmrv Senior Member

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    That's a long time to suffer Barry. I'm sorry that you ended up in front of Wessely at the Maudsley. As I remember it the Royal Free got rid of Willie Weir and he ended up going abroad. There was no ME treatment at the RF until they hired Dr Murphy and she is a PACE / NICE advocate.

    I was lucky in that I ended up seeing Dr Jenkins around the same time so I was shielded and helped in many ways.

    The 90's as I remember it was the darkest decade for me in London as an ME patient. As the Psych group really took over and moved into position we lost our doctors, the press was constantly insulting, "yuppie flu" insults everywhere.
     
  12. alex3619

    alex3619 Senior Member

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    Hi Barry, I am sorry to read this but it seems like an all-too-common story. ME patients need decent treatment and care, and with current evidence it verges on medical incompetance to deny that treatment. The problem is that most doctors do not know the research, and the guidelines being used are highly distorted. Doctors therefore have the defence tthat they are using established guidelines.

    There is a long history of patients wrong diagnosed with psychosomatic illnesses who then died from a purely physical illness. Eliot Slater (1960s) wrote about a few of these.

    Things will change if we make them change. The evidence is being denied, but that cannot continue forever. How fast things change is up to us and the scientists and doctors who work to our benefit.

    Welcome to Phoenix Rising.

    Best wishes, Alex.
     
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  13. Bob

    Bob

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    Hello Barry, and a big welcome to the forum. I'm sorry to hear of your experiences. Unfortunately, your story is all too familiar.

    A few years ago, I was repeatedly visiting my doctor, complaining of a lung problem, and of associated (I thought) malaise, but I wasn't offered any serious investigation into it, or treatment for it. After repeated visits, my doctor obviously had me down as a time waster, and he treated me dismissively and with derision. On one visit, I was once gently ushered out of my doctor's surgery (The doctor opened the door for me to leave his office, before I thought we had finished the consultation.) A year or two later, after changing doctors, it was discovered that the doctor who ushered me out of his surgery had not noticed (or had not acted upon) my clinically under-active thyroid test results. It was the under-active thyroid that was causing my lung problem, and some other symptoms, including additional malaise and fatigue. My lung problem was fixed once the thyroid was treated. This was a clear case of clinical neglect, which could be proven, because my test results were well documented. The doctor was clearly in the wrong.

    Whereas my thyroid results were clearly documented, there are no test results for ME. So it is all too easy to give us a label of "time waster", and to treat us dismissively, without any repercussions.

    Many of us are familiar with the dismissal and derision that comes with an ME diagnosis. When we first become ill, we feel desperately ill and bewildered, so we visit our doctors frequently, complaining of symptoms of malaise and exhaustion, and we are repeatedly told to come back in a month if we are still ill. The doctors can't easily diagnose us, and then they don't know what to do with us, and so we cause them stress, and eventually we realise that they don't really want to see us, and that they can't or won't help us, so we stop visiting them.

    That's my own experience, anyway.

    Yep.
     
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  14. Shell

    Shell Senior Member

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    Barry Savage Your story is heart breaking and frankly it should be utterly embarrassing to Wessley and all the other docs who have behaved like that.
    Munchhausens!!! Really!!! As my dh said to me not that long ago (he works for CAMHS) "no real doctor would dare try and raise the Munchhausens label these days. They would look stupid." If only that was true in adult medicine too.

    As you note, I think just about all of us have been through the mill with doctors who give the impression they snored through medschool - if they ever bothered turning up, and have certainly not read anything more challenging than Nuts or the Beanie since they got their shiny new stethoscope (that they can't be arsed to use).

    Welcome. to the forum. You are not alone in what you've been through.
     
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  15. user9876

    user9876 Senior Member

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    Its not uncommon for parents of children with ME to be suspected or acused of Munchhausens by proxy either as the child has been ill for too long or because they want tests to be done to rule out other causes of illness. It may be that a doctor raising that label would look stupid but that is because they have renamed it to FII (Fabricated or Induced Illness).
     
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  16. PennyIA

    PennyIA Senior Member

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    Actually, my nine year old son has spent about two months going to bed directly after school. Compiaining of being tired, sore throat, headache. I've taken him in for routine screening and the MD came back 'depression'. Ok, he's not depressed in any of the 'typical' types of things. He is being treated for anxiety. And I will do my due diligence and when we next see his psychiatrist we will discuss the possibility. But he's not depressed. If anything, he's so much more happy and 'bouyant' than he ever was pre-anxiety treatment.

    And, I am hoping against hope that this does pass. And that he isn't about to head down the path I am already on. I really do. But, if he doesn't start to see improvement in the next few weeks? I'm already worried about getting labeled Munchhausens by proxy. As it is, I can't get my regular MD to acknowledge or treat any of my ailments and I feel like he's constantly dismissing them (or screening for cancer - apparently one of his favorite activities; and then dismissing them).

    My plan is to do the 23andme with him and if he has half my Methylation defects, we'll at least support that process and see if it makes him a little less prone to other issues.
     
    Shell likes this.
  17. Enid

    Enid Senior Member

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    I wonder if it is possible to sue the NHS in the UK - first no tests for hypothyroidism - go to the gym - picked up a year later as severe by luckily another in the same GP practice but too late as ME with all the known symptoms developed, bed bound, unable to walk nor speak, intense pain etc. Though collapsed 4 junior Docs in A & E "diagnosed" a psychiatrist needed.

    And in case SW and his crackpots are looking in - my memory, vocabulary, recognitions have now returned after many years (much effort solely on my own part from those who understood the pathologies in ME and best supplements to treat/aid).
     
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  18. Shell

    Shell Senior Member

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    Honestly this makes me angry. So Munch by Prox gets shown up for the crock it is over those court cases, where mothers had even ended up in prison with this fake dx - and that doc whose name I can't remember, and instead of burying it all and walking away they rename it Fabricated Induced Illness! :mad: It's not so much that medics don't learn, it seems they deliberately refuse to learn.
    PennyIA it's just wrong that you should have to feel, not only the concern over a sick child, but the fear of some stupid medic coming up with some fake dx.

    I still remember the day in the hospital when my daughter had just had her first birthday. She was limp, dry and very very hot, unconscious with an NG tube and a drip. Nothing was working and I sat there praying she wouldn't die.
    Some junior doc walked in and said "Bloods are back, it's just a virus."
    I stared at him. "What do you mean JUST a virus?" I yelled at him, "Look at her!"
    He shrugged a bit awkwardly and said, "Yes well, its a bad virus," and he bolted from the room.

    I think their egos are so fragile that if a patient presents them with something too complicated to be fixed with quick prescription they panic and start saying "it's nothing really" even when a 1 year old looks like she isn't going to make it.
    She did thank God - and how she did is another story.
     
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  19. David Egan

    David Egan Hermes33

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    You are wrong on several points. The issue is one of credibility and in order to establish credibility we must have letters signed by these doctors and researchers sent into leading newspapers and scientific journals. Once we have credibility for our illness then governments and research bodies will increase research funding into the biological causes of ME/CFS. For 20 years we have had researchers being blocked from getting funding because ME/CFS lacked credibility. The psychiatrists had destroyed the credibility of ME/CFS. And those researchers who got funding received very little money, and their results were mixed. Its all about establishing credibility and using this to get more money for research. ME/CFS receives very little funding compared to other illnesses.

    You cannot rely on the existing system, dominated by wessely and his school, which has reduced ME/CFS research funding down to pennies and cash starved research !
     
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  20. anniekim

    anniekim Senior Member

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    Professor Newton, she is doing research into the ans in m.e and other things in Newcastle, Uk, in an interview out online today says how some eminent colleagues mock her for being involved in m.e research. Sadly not surprised to hear this but still depressing and gives a a further window into what many of the the medical profession here in the uk think of our illness
     

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