1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Horrifying article in Sunday Times

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

  1. biophile

    biophile Places I'd rather be.

    Messages:
    1,370
    Likes:
    4,276
    You forgot...

    Militant: submitting a FOI for unpublished data which PACE promised to publish when they received public funding.
    taniaaust1, Valentijn and ukxmrv like this.
  2. PhoenixBurger

    PhoenixBurger Senior Member

    Messages:
    174
    Likes:
    123
    I havent read this whole thread. But there are *so many* autoimmune conditions out there which are well known to cause psychological and cognitive problems as an *effect* (not the cause) ... that it astounds me any doctor would have the audacity to claim that this one is somehow unique in that regard. These otherwise intelligent individuals go from being educated and aware of the endless shades of gray in medicine, to suddenly not being able to tell their ass from their elbow, and blurt out these nonsense theories that contradict everything they know. Completely the opposite. Suddenly the concept of an infection, or an autoimmune disease causing cognitive changes seems impossible?

    Please everyone - hang in there as long as you can. The medical community is soon to undergo a drastic upheaval. And it is going to consist of the complete revamping of their entire idiotic culture, mentality, arrogance, and pompous ignorance. By taking the power from those who hold the power, and giving it to the patients. All thanks to myriads of new technologies on the very close horizon. Any time I get upset by articles like this, I remind myself of what is to come. We are on the verge of a technological revolution.
    Marlène likes this.
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,330
    Likes:
    1,762
    London
    I would be very disappointed not to be on one of their lists.

    However, cannot overlook that the way in which the lists are descriibed and the carelessness (deliberate) of the reporting which connects the list to the police/authorities is intended to scare and intimidate patients.

    It has been reported in such a way to cause distress and fear to a group of disabled people who have committed no crime.
    taniaaust1, jimells and MeSci like this.
  4. biophile

    biophile Places I'd rather be.

    Messages:
    1,370
    Likes:
    4,276
    Writing a book on the subject is very naughty Alex! It cannot be helping you lose the patient label. ;)

    Medical Establishment Approved Pseudoscience?

    UK-approved.jpg

    PS. Would this earn me a place or move me up on the list? :nerd:

    PPS. Who does the above smiley face look like?
  5. user9876

    user9876 Senior Member

    Messages:
    707
    Likes:
    1,628
    It would be interesting to look at the IP addresses of the viewers to see if any came from Kings/Queen Marys etc. Of course that doesn't identify individuals or even which bits of a very large institution were looking.
  6. Artstu

    Artstu Senior Member

    Messages:
    183
    Likes:
    71
    UK
    :nerd: him over there < :rolleyes:
    taniaaust1 and Valentijn like this.
  7. biophile

    biophile Places I'd rather be.

    Messages:
    1,370
    Likes:
    4,276
  8. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,227
    Likes:
    3,626
    Cornwall, UK
    I agree with both points. They could have simply typed the wording of the 'threats'. It is very common for journalists to misrepresent people and facts. It has happened to me a few times.

    As for the names being disclosed to a journalist - again, this is really bad. The police would not even give me the name of the man who made an abusive phone call to me, which did cause some anxiety as he had used very strong language and said that people like me (opposed to vivisection - a valid viewpoint) should be killed and tested.
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,079
    Likes:
    1,582
    Somewhere near Glasgow, Scotland
    Oh then again *remembers* I probably AM a militant!
    why? because I humorously suggested that maybe if we peed in MPs' tea, they'd take this illness more seriously!
    which of course will have MI5 flagging me as a "terrorist!"
    YEAH, I AM OSAMA BIN LADEN'S POT BOY!!
    Fear me as I jihadi politicians and psychiatrists with CHAMBERPOTS O' DOOM! :whistle: :eek: :confused:

    *mad Scotsman runs up to bunch of Establishment figures, rips off his jacket showing he's covered in urine bags and leaps on 'em! *
    "FREEEEEEEDOM!"
    *SPLORCH !*
    Take THAT, Oxbridge-Etonian elitist swine! :sluggish:

    well knowing some of their proclivities they'd probably enjoy that.... :alien:

    hey, as I'e said before SQUEAKY WHEEL GETS THE GREASE... ;)
    If we want change, being "nicey nicey" will NOT do it. those arrayed against us are bullying, self-made sociopaths, they simply do not want change, they do not want their little bailiwick disturbed, their petty fiefdoms challenged or taxed
    They MADE THE RULES OF THE GAME, so we *cannot* win it their way.
    Doesn't mean you have to hurt folk or harass them personally, does mean we should treat them like the assholes they are (the real assholes, not ones who genuinely disagree, find different research findings etc)

    Just wish the *real* loonies out there would learn you don't need bombs, or the most dangerous of all loonies, that "the ends do NOT justify the means" and their desire for power is the most terrible and murderous addiction the world has ever known.
    ie, terrorists are bad but they are *nothing* compared the incredible hubris of people like Tony Blair "I made the right call in Iraq!"
    I think half a million dead folk and perhaps HUNREDS of millions of dead/deformed Iraqi babies over the next millennia or two suggest otherwise.

    PS the UK and USA *are* police states by most definitions.

    UK police have been caught wasting incredibly expensive/difficult resources infiltrating middle class, FAMILY type environmental activists and then making their undercover cops act as agents provocateurs, which is highly illegal and completely batshit
    it they they encouraged ordinary folk to do illegal things in their protest os they could stop the protest
    what illegal things? bombs, guns etc? no, TRESPASS...sigh you couldn't make this crap up, but it's true.

    http://www.guardian.co.uk/uk/2011/jan/10/fine-line-undercover-officer
    http://liberalconspiracy.org/2011/0...lice-agent-crossing-line-during-cuts-protest/
    http://www.channel4.com/news/undercover-police-officer-was-agent-provocateur



    and USA, Boston bombings led to an eye opener to those who didn't know this crap was going on

    http://www.guardian.co.uk/commentisfree/2013/may/04/telephone-calls-recorded-fbi-boston

    those of us who've read up on such for ages know about VENONA and ECHELON

    as a certain philosopher once said
    "Those who fight monsters had best beware in case they become monsters.
    And if you gaze too long into the Abyss, the Abyss also gazes back into YOU!"
    ahimsa and jimells like this.
  10. lnester7

    lnester7 Seven

    Messages:
    1,183
    Likes:
    1,055
    USA
    Throwing pee bags!!!! OMG this image is so funny I about P## myself :D
    SilverbladeTE likes this.
  11. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    I've never seen anyone more self satisfied than "smiley" above (SW or Sir SW) - get out. This is no Doc as I know it (4 specialists in my own family). SW is not medicine but entirely self seeking, self promoting, obvious personal problems to ensure his grandeur - is this man human in the fullest sense of the word.
    SilverbladeTE likes this.
  12. Shell

    Shell Senior Member

    Messages:
    477
    Likes:
    612
    England
    I've seen all this play out since I've been looking into what made me ill. I've read Osler's Web and I saw up close the bizarre approach to my friend's ME back in the '80s before I realised how much politics were at play. I just saw a friend who had been healthy, become very sick indeed and then find he couldn't get any medical help. Thankfully he got the bed rest he needed and he's in remission (mostly) these days.

    What I can't get to, or understand at all is WHY this has happened. What was it that made the CDC refuse to investigate the outbreaks at Tahoe and other places? What were they afraid they were going to find?

    I am sick to death of reading and hearing stories from very seriously ill people who were told "you're depressed" or "it's anxiety" from medics who obviously don't have a clue what depression and/or axiety is and don't seem to have a clue about basic medicine either.

    Was anyone around on the inside in those days when this all started who has spoken out about what happened? Something allowed the likes of "Sir" to get his claws into us, but I can't work out what or how.
    Cheshire, MeSci and Enid like this.
  13. Nielk

    Nielk

    Messages:
    5,138
    Likes:
    4,842
    Queens, NY
    Why are we giving ignorance so much attention?
    ahimsa likes this.
  14. Hip

    Hip Senior Member

    Messages:
    2,708
    Likes:
    2,460
    That is an amazing new finding: that chronic back pain is often caused by infection in a spinal disc by the bacterium Propionibacterium acnes.

    Yet another disease of hitherto unknown etiology has turned out to be caused by a hidden microbial infection. Brilliant work by the Danish team of scientists, the culmination of 10 years of research.

    As biomedical research continues, I expect that science will find more and more diseases have infectious etiologies; I think that whole swathes of common diseases will turn out to be underpinned microbial infection. And in particular, I think the so-called somatoform disorders will turn out to be caused by microbial infections that are largely undetectable by current techniques.

    I wrote the following on my website:
    Marlène, Valentijn and Enid like this.
  15. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Yep I agree Nielk - why are we paying attention to the c.... of the ignorant psychos (should try Neurology, Immunology etc but appear not bright enough). Long since lost any real respectability here. And if not too simple - no real science/medicine behind them. SW et al a complete bore.
  16. Bob

    Bob

    Messages:
    7,946
    Likes:
    9,862
    England, UK
    It's just my take on it, and I might be way off, but my thoughts on it are as follows...

    Governments don't like any types of 'outbreaks', or other such unpredictable events, and they quickly move to put a lid on potentially escalating public relations disasters. Outbreaks or other such unpredictable events can quickly escalate into public alarm and panic, and very bad public relations disasters for governments. Governments don't like 'unknowns' and they like to keep a lid on alarming 'events', including health scares (unless the public 'alarm' helps them in facilitating their desired policies.)

    So, when 'unknowns' occur, governments look towards people who can give them quick, simple but reassuring and convincing answers.
    When a simple answer has been found (e.g. a health scare is due to 'hysteria'), then the media (and therefore the general public) are satisfied, because they have a story that they can run with, and then the whole story can closed with the simple answer of 'hysteria' etc.

    Unfortunately, with ME/CFS, there has always been a vacuum of knowledge. There are no definite answers, and limited research has been carried out.
    Where there is a vacuum, something tends to fill it.
    Unfortunately, real meaningful research takes a long time to progress, so anyone who can come up with quick and easy answers (e.g. quacks, charmers and snake oil sellers) is able to fill the vacuum, and benefit personally from promoting themselves as an expert with regard to the issue at hand.
    It's also just simple human laziness to accept the easiest and simple answers, if they seem adequate.

    In this case, psychiatry has been able to fill the vacuum.

    I think a number of players have enabled this to happen:
    1. Government. As I said above, governments need simple and convincing 'answers', even if the answers aren't adequate or accurate. As long as the answer seems convincing, and there isn't any overwhelming evidence to contradict it, then it will do, and the government will buy into it, and use it. Increased complexity means bad public relations, uncertainty, and more financial cost or investment.
    2. Health Care Services. Health care services need to be able to offer 'something' to patients, otherwise they will be accused of neglect. Along comes psychiatry and offers some simple 'answers' and 'treatments' that have some sort of 'evidence' behind them. However weak or distorted the evidence, health care services need peer-reviewed evidence upon which to base their services.
    So, the health care services can now tell patients that they have a certain type of illness, and patients are offered a 'treatment'. If patients complain, the health care services just have to say that they have based their services on the best available evidence.
    Psychiatry has given health care services the option of some easy and cheap answers and treatments.
    3. Academia. Unfortunately, academia is very conservative. Although academia likes to pretend that it is anything but conservative, in reality it's run by an old boys network. The old boys network controls funding and promotions etc. Therefore it is difficult for researchers to break out of the established mould, and to publicly challenge established dogma. Careers can easily be ended if enemies are made. As in all 'old boys' networks, the 'old boys' protect each other, promote each other and defend each other, treating outsiders with suspicion and contempt. (Obviously not all of academia is like this, but there is an element of it which seems to have some influence. There is obviously a lot of good stuff going on in academia as well.)
    4. Private insurance. There's a lot of money involved in health in the USA. As such, perhaps the private insurance industry has played a role in the illness in the US. My understanding is that insurance companies pay out far less if an illness is classified as a mental health issue, or similar. We know that some of the leading CFS psychiatrists in the UK work for the insurance industry. As such, there is a lot of money sloshing around to support the psychiatric position.

    In the UK, psychiatry seems to have an enormous amount of influence in government, health care, and academia. I'm not so familiar with the US system. The UK CFS psychiatric 'industry' now has a large network of researchers, therapists, doctors, and NHS/private clinics. They do not want to loose their influence, status, or income. It's a big industry.

    Things will change, and I personally believe things are now changing rapidly and radically. I think we are hearing so much (hysterical) noise from the psychiatric lobby because they are fearful of the current changes taking place, and what it means to them in terms of lost funding and status etc. I believe that the louder and more shrill they become, the better it is for us in the long run, because it means that things are definitely changing. Perhaps the situation will escalate somewhat before things become obviously better for us.

    Counter-intuitively, I believe that if they were silent, then the situation would actually be worse for us.

    I'm ever the optimist, but I really do see things changing. There's been such an enormous amount of good news recently, that this ridiculous article has totally failed to demoralise me, unlike past articles, despite me having experienced a minor relapse recently.

    (Perhaps we should set up a good news thread, where all the good news can be collated.)

    (Edit: I hope I haven't come across as too much of a conspiracy theorist here. I don't believe that the whole of society is run in the way I have described above, but things can go wrong in society, and it seems to have happened like this in the field of ME/CFS, as far as I understand it all.)
    Countrygirl, Valentijn and Hip like this.
  17. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Things are changing Bob - but only due to OUR concerted "fight" over many years since the Royal Free.
    Valentijn and Bob like this.
  18. Hip

    Hip Senior Member

    Messages:
    2,708
    Likes:
    2,460
    Bob
    Your above points 1 to 4 are an astute overall analysis of why the Wessely School pseudoscience has had so much influence. Your analysis shows that the dominance of Wessely School views are a result of an unfortunate confluence of factors, all of which have, for their own individual reasons, unfortunately supported these views.

    Without this confluence of factors, Wessely School views would have remained as an obscure academic pursuit. But this confluence of factors has unfortunately seized upon these view and elevated them to primetime. Wessely School views have not dominated out of their own merit, but out of their convenience and utility to various other interests.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,227
    Likes:
    3,626
    Cornwall, UK
    because others will, and they need to see what we have to say about it. Otherwise there is a danger that it will work as unchallenged propaganda.
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,227
    Likes:
    3,626
    Cornwall, UK
    This is exactly what happened after a serious water poisoning incident near where I lived - a small town called Camelford in Cornwall. It was only this year that I found out who was the chief orchestrator of the 'all in the mind' explanation for people's consequent illness. I will give you only one guess...

    When you have guessed, and if you have the stomach for it, you can read the said person's account of this incident of mass hysteria (which must have been very powerful hysteria as it also killed animals and turned people's hair green) here:

    http://theoneclickgroup.co.uk/documents/ME-CFS_docs/The Legend of Camelford.pdf?oo=0

    A group called MEActionUK have collated info on the incidents and illnesses for which this person has proposed these theories.
    SilverbladeTE likes this.

See more popular forum discussions.

Share This Page