New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Morgellons: real disease or imaginary malady?

Discussion in 'Other Health News and Research' started by daisybell, Jun 19, 2015.

  1. daisybell

    daisybell Senior Member

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  2. daisybell

    daisybell Senior Member

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    Excerpts...
    Making Sense of Morgellons
    Where has all the hysteria gone? One suggestion, fiercely resisted by its sufferers, is that it (or some portion of what was once labeled "hysteria") has undergone a metamorphosis and reemerged as that cluster of mysterious ailments variously referred to as "chronic fatigue syndrome," "fibromyalgia," "neuromyasthenia," "postviral fatigue syndrome," or sometimes as "myalgic encephalomyelitis" (often shortened to its perhaps unfortunate acronym, ME). Skeptics for a time preferred the derogatory term "yuppie flu."

    Like Joni Mitchell's Morgellons disease, these ailments (assuming that the disparate labels refer to the same thing) occupy a highly ambiguous status in the medical firmament. Once again, there are no characteristic laboratory abnormalities that serve to identify cases of ME or chronic fatigue syndrome, and many are inclined to doubt the disease's physical reality, suggesting rather that it is a form of psychiatric disorder. No obvious and uncontested biochemical or metabolic abnormalities correspond to patients' subjective symptoms. Nor does this condition correspond to any known neurologic disorder. Sufferers complain of muscle pain, persistent headaches, unrefreshing sleep, sore joints and throats, impaired memory and generalized malaise, not to mention impaired ability to think and to concentrate—and even this extensive list fails to include the full panoply of symptoms some patients experience.
     
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  3. daisybell

    daisybell Senior Member

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    And more...


    What are we to make of it all? It is clear what those complaining of these syndromes want. Bitterly, the fatigued denounce their critics, the worst-placed rattling their wheelchairs in lieu of shaking their fists, accusing doctors of being "lamentably ignorant of the most basic facts of the disease." Proudly they rededicate themselves to what one of the targets of their ire, the British psychiatrist Sir Simon Wessely, has suggested that they consider: "the long uphill battle against ignorance and inertia."

    Pesticides, hormones, chemicals, bacteria, viruses: Something must surely be responsible for these patients' suffering, and if modern medicine pronounces itself unable to oblige with a physical account of their troubles and proposes to ship them off to the tender mercies of the psychiatric profession, then they are off elsewhere. Off to self-help or to holistic practitioners, who are happy to display more sympathy and faith in the physical reality of their disorder, and to link it to the perils of civilization, only this time in the guise of a poisoned modern environment. Off to online support groups, where they can multiply their tales of woe and sense of grievance.

    The verbally and sometimes (ironic as that would be) almost physically violent response of many of these patients to the suggestion that their symptoms are psychosomatic, or "all in their heads," is impossible to miss. Those who question their insistence that their disease is "real"—that is, rooted in the body—are deluged with abuse.

    Wessely, for example, who was last year's president of Britain's Royal College of Psychiatrists, once worked extensively on chronic fatigue syndrome. Although he was willing to consider the hypothesis that viral or other unknown infections might initially trigger the disease, he proclaimed that psychological and social factors were far more important in perpetuating it, and that it largely resulted from dysfunctional illness beliefs and coping behaviors. His reward was to be inundated with abuse and personal attacks, even threats on his life. His mail has had to be X-rayed, and at times he has had police protection. Not entirely surprisingly, he has ceased further research on the subject.

    Dubbed by the tabloids "the most hated man in Britain," Wessely's experiences are testimony to how desperately many of the afflicted want a neurologic diagnosis. That diagnosis will validate the reality of their disorder, and legitimize their suffering. But the neurologists who have grown to professional maturity in the post-Charcot world evince little or no interest in their troubles. Pausing only long enough, in the most plausible of cases, to subject them to batteries of tests and scans before pronouncing them physically normal, they suggest these nuisances go to see a shrink. That, as we have seen, is the last thing these patients want.
     
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  4. daisybell

    daisybell Senior Member

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    A last desperate attempt to hold on to an untenable position in the face of overwhelming evidence to the contrary perhaps?

    I just wish they would stop it. It's cruel and hateful and harmful.
     
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  5. Effi

    Effi Senior Member

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    *sigh* When I first read this article I was appalled! But a couple of minutes later I thought: why even bother to think about this BS any longer?
    That's exactly what I was thinking, @daisybell . The way they try to get their opinion across, in an ever more snidy, condescending tone, it's starting to look pretty desperate. o_O
     
  6. Sasha

    Sasha Fine, thank you

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    And what's a response that is 'almost physically violent'? A response that isn't physically violent at all, obviously.

    What a pile of hate-filled crap.

    Who is this? Are they employed by a university?

    I think our charities should be writing to this person's employer.
     
  7. minkeygirl

    minkeygirl But I Look So Good.

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    " Wessely's experiences are testimony to how desperately many of the afflicted want a neurologic diagnosis. That diagnosis will validate the reality of their disorder, and legitimize their suffering

    I don't think we "desperately" want a neurologic diagnosis. We just want one that isn't some BS that if We were More sociable, and managed our illness better we wouldn't be so sick. Total garbage.
     
  8. minkeygirl

    minkeygirl But I Look So Good.

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    What overwhelming evidence to the contrary?

    No one is hunting down klimas, Montoya, Lerner and others. Dick wads like Wessely are the only knew being hunted. I only wish he and his minions would get this so we could shove their words down their throats like they cry like little babies at how crap they feel.
     
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  9. Esther12

    Esther12 Senior Member

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    LOL. Looks like he's written an article based on wikipedia there. A few extra errors too. Oh well.
     
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  10. Effi

    Effi Senior Member

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    We don't even want any diagnosis. The only thing we want desperately is to get better. We are willing to try anything at all. Most of us have tried the psycho-approach and failed miserably. All they offer are things that make us worse, not better. So we obviously moved on from that. I don't understand how this basic logic is so lost on them...
     
  11. msf

    msf Senior Member

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    Ah, you meant is it an imaginary illness. I read the title of the thread it as if you were presenting your case to a female judge.
     
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  12. halcyon

    halcyon Senior Member

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    This guy feels like a carbon copy of Edward Shorter. Why is it always professors that write inane pseudo academic drivel like this. They get all their "evidence" from the history books instead of the medical literature. The real question is why is Medscape publishing crap like this?
     
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  13. Sidereal

    Sidereal Senior Member

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    I don't recognise this name. New assclown on the block?
     
  14. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Halycon asks, 'why do people publish sub standard drivel?'

    The simple answer is it's because it's easy to pick on defenseless people with no health and no money to mount any counter claim. People who can't get in the public eye due to who influences, controls and owns the press and who is linked to the government.

    A more complex answer now follows:

    In the UK we see the same thing over and over with 'CFS' being promoted in the press as the reserve of middle class white people. Alleged worried white people who call into BBC Radio about their tired daughter who is missing their clarinet lessons at boarding school. Before this, we had GWS ex army who are not ill at all but said to have 'battle fatigue' seen 100's of years ago. Or we have neurologically damaged folk, exposed to sheep dip who are deluded. (Except this trash talking about doubts over Sheep Dip causing 'ME' type illness has now been proven to have been covered up by the British Government, who were told to actively conceal the truth to the British public).

    Revealed: government knew of farm poisoning risk but failed to act

    http://www.theguardian.com/environm...knew-of-farm-poisoning-risk-but-failed-to-act

    For CFS to be ME, you need a ring leader as victim and other victims as the followers of the new prophet, who professes to be very clever, and devoted to 'helping patients', who are 'stuck' in their way of thinking.

    So you need masters at deception (due to being sociopaths and having no guilt over their actions). The types are employed to cast doubt on the legitimacy of ME, by using CFS, which never needs to be proven to exist. This means the situation of no effective treatment never has to change for ME, meaning anyone with dirty hands, never needs to be exposed and serve possible criminal justice (such as infecting the public with pathogens due to a lab accident or possible biowarfare experiment - or both). 'ME' infamously appeared in Hospital staff in the 1950's.

    By coincidence or not, documents from the 1950's in America, still redacted but available to the public, prove, that children and hospital workers were purposely infected with pathogens by the US Govt, even the immune suppressed (children are by nature immune suppressed). The names of the pathogens, of course, remain classified. Thus there is no proof, and the infected people, die off. That's how you erase a problem. Silence.

    The cause of ME remains unproven, due to ME patients being rarely researched, and never researched in its severest form with proven neurological conditions (such as POTS, Epilepsy, GH deficiency) because these effects of 'ME' get you removed from CFS diagnostic criteria at a research level. That is very important to remember, when considering why no one ever finds anything huge of a neurological level, in 'CFS/ME' patients. (e.g. Severe autonomic dysfunction is huge in terms of it devastating patients lives, but POTS is NOT associated to CFS officially, even if it is not uncommon in severe PWME and well known at a research levels to be associated with 'CFS').

    POTS on NHS Choices web page (Nothing about ME or CFS is mentioned!).
    http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx

    By the NHS not revealing POTS is found in ME/CFS 'no evidence' exists that 'CFS' or 'ME' is neurological, and denying ME CFS remains simple, due to the CFS/ME NICE Guidelines not requiring a TILT test for POTS. Conversely, not telling the public on the NHS Choices CFS page (ME page is not permitted), that CFS is associated to POTS - a proven neurological syndrome is a direct deception of the general public and of course, clueless or biased journalists.

    A benefit for the state regarding neurological severe ME of the 1969's to 1990's (infected kids), is the patients grow old and die, which means no one can sue for damages against the NHS or other state body and their careers as professional vocal skeptics are not laughed at in the future.

    Away from the press, medical journals and websites also have deep seated interests and are paid off to keep the status quo, because their job is to influence joe public, to prevent the above ever happening - realization by the public of what has happened to the people who suffer or who have died from ME. The public would understand this is a scandal and revolt. Revolt by various means, one of which is to change voting tactics at the next election if a certain government proven to be involved in the conspiracy to hide ME, was exposed.

    It is of paramount importance when a potential heinous criminal act has been carried out by a state employee on a grand scale (such as infecting tens of millions of people), that the people targeted are disbelieved and blamed for their own suffering. Focus is then drawn away on the people who caused this.

    For this, you need skeptics and of course, psychiatry when dealing with a medical problem. Psychiatry attempts to explain the unexplained, by not having to use a variable that needs to ever be proven (non science). Thus, you can claim legitimacy of your unproven theory, to suggest that the suffering of ME patients is not due to an infection, not due to an autoinflammatory state, and certainly nothing that is life threatening or even fatal disease in some cases. Instead, as the under pressure disease skeptic you can claim to be the victim yourself, and the patients you are killing off indirectly (by spreading doubt about their legitimacy), they are the psycho's.

    For that, you need the press and links to the press. The press are owned by corporations, corporations who fund governments, to keep them in power by controlling what the public know and read. They are all linked, indirectly and directly. This system of control can never be defeated in a modern western democracy, because of how parties need to raise masses of money, to get 'visible' on the political sphere, to get voted into power.

    Even if only 0.1% of people with 'CFS' were one-day proven to have a genuine unexplained infection not yet discovered by science and 99.9% really are hysterical, if this infection is caused by man, caused by people with lots of money to lose if exposed then it's very simple to influence people to write trash articles in the press about crazy conspiracy theorist patients, and even produce polite worded 'research' proclaiming they are all insane and all universally have mental illness but are just in denial. All in the best taste of course, by making sure with every article written, you are the victim, not the patient and not the families of patients who have often, sacrificed their own freedoms (have to stop working and so become impoverished), to look after their disabled children.

    It's really the oldest trick in the book, the same idea as a thief breaking into your home and accusing you of robing it.
    People then look elsewhere, not seeing the perpetrator is hiding out in the open. NB: The best place to 'hide' is a visible place), as then you will likely never be 'found'. Look at what has happened in the British sexual abuse cases, top brasses all involved in an incestuous web of lies and criminal activity, but no one is charged, because to charge them brings shame on the establishment of old, and the current sitting government who fear losing votes if they are allied to them in any way at all.

    It's been done to so many people in the past with neurological diseases, such as Parkinson's and MS. Currently it's ME and Lyme patients who bear the biggest burden of disinformation and misinformation about their life crippling conditions.

    CFS as a neuro disease as bad as MS is certainly 'out there' in terms of a genuine belief for the average doctor. So, thus, the level of rejection of neurological damage in ME (as Chronic Fatigue) is unquestioned and rejection of what the patients experience at ground level (in terms of medial hatred against patients) is not monitored by the UK press standards commission who don't give two hoots what respected people have to say about disabled people with no voice.

    This means how much folk can joke about people with alleged infections (said to be self caused - behavioral - or exclusionary - mental health, is unlimited. Over the decades few with good intentions now believe in ME and most believe that ME is CFS, and certainly not a chronic potentially fatal disease. In fact, doctors would laugh out loud at that idea, because they see and hear the word 'Fatigue'.

    This natural human emotion of skepticism of the legitimacy of ME suffering, however, can be manipulated into more than that (as we all know who have a long term ME or PVFS diagnosis that became CFS, that became chronic fatigue, that became it must be imagined). For that, you need to see the weak and vulnerable patient cannot defend themselves. For this you need tactics and know how and when to deploy them (a military background is best), as the military are expert tacticians. In-fact, mixing military with psychology would probably be best to pull of a massive ruse.

    Tactics are employed against determining the ME patients and unquestioned by ethics committees. Away from ,E, exploiting an exploitable situation wherever possible will be carried out for eternity be it against the disabled, or against other minorities such political, religious, racial and sexual. It's like taking candy for a baby.

    Using the media to spread disbelief is very powerful. If you know powerful people with connections and money. Online disinformation becomes an unchallenged monopoly on trickery if you know what you're doing. Which of course, those who do this for their jobs, do know. Hence they are rewarded to dis inform.

    How did this all happen and how is it maintained?

    Prevention of medical treatment in ME (as CFS) requires denial. Ending denial of ME, requires change:

    To stop change, you need to continue unchallenged you would allow and ignore 'respected people' trash talking against PWME (as CFS). You'd make sure you'd never......


    1) Alter the case definition of Fukuca CFS away from neurological ME. (Gov't won't allow it and want CFS as ME/CFS requiring no evidence of organic disease). Despite current leaps in medical research for 'CFS', Govt ignored the top level ME researchers, and produced the insufficient symptom based SEID, that is sub standard and non scientific. Naturally to pull this off, you had to get all the 'pro ME' doctors out the way first, which is precisely what happened. The P2P is just the icing on the cake....

    You'd make sure you'd never.....

    2) Require organic disease evidence at time of diagnosis (Gov't won't allow it).

    3) Allowing appropriate levels of research funding to now research the actual diseased group of patients, rather than mixture of people with a plethora of complaints (some real some imagined) and non proven to be there at the time of diagnosis anyway (win win situation for the state), thanks to Fukuda CFS criteria.

    You'd make sure you'd never stop....

    4) Doctors, the press and wider public discriminating against those with ME or CFS. This won't happen, due to no 'proof' ME/CFS exists, due to Fukuda CFS criteria. Thus those who are biggoted against ME patients, can excuse themselves as being simply 'inquisitive' if the ME patients really is as sick as they say they are.


    Thus, it's in the Govt's interest to allow influential people (including journalists) to slag off ME forever, and never research ME because ME CFS isn't what stops them from going to sleep at night. It's the millions of deaths, from cancer, potentially caused by their own cancer research of the past that mixed human and animal cells, that were inhaled by scientists and taken out into the public, unwittingly.

    How do you tell the public that? You don't.

    If you stay silent, then you will kill off all the 'old' ME patients, in time. And those left, will be a much lower percentage as those who were most sick, got sick as children, never had sex and certainly didn't have children and died, thus not spreading their condition further.

    Thus the promotion of trash talking against ME sufferers, by odd people is paramount.

    It's call disinformation. All governments do it.
     
    Last edited: Jun 19, 2015
  15. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    AUTHORS AND DISCLOSURES
    Author(s)
    Andrew Scull, PhD
    Distinguished Professor of Sociology, University of California, San Diego, La Jolla, California

    Disclosure: Andrew Scull, PhD, has disclosed no relevant financial relationships.

    Jerk.
     
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  16. minkeygirl

    minkeygirl But I Look So Good.

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    This just reminded me of a movie called "Hysteria" with Maggie Gyllenhall and Hugh Dancy. Back then cranky women were called "hysterical"

    "Two doctors in Victorian England use manual stimulation of female genitalia to cure their patients' ills, leading to the invention of the vibrator."
     
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  17. Valentijn

    Valentijn The Diabolic Logic

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    He's not a doctor and seems to have no background at all in biology or medicine:
    So basically he's talking out of his anal orifice, which seems par for the course for him. He's published a lot, but also suffers from having a big-mouth and lack of concern for supporting evidence. He's been called out for a nasty book review he did where he basically just disagreed with everything but didn't cite to anything. And in 2009 he wrote a letter proposing that the inferior University of California campuses be shut down to save money, so they could focus on the prestigious ones such as the one he works at.

    But as head of an academic department, and presumed tenured, I'm not sure that the University could do anything about him, even if they wanted to.
     
  18. Valentijn

    Valentijn The Diabolic Logic

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    Actually, it looks like he isn't head of the department anymore.
     
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  19. eafw

    eafw Senior Member

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    This really tells us that it is these psychs who are the desperate ones, that they like to have "hysterical" people to scapegoat and will look to pin the label on any suitable (to them) target.
     
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  20. Valentijn

    Valentijn The Diabolic Logic

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    The amusing thing is that this one isn't even a doctor, psychiatrist, or psychologist. He's completely unqualified to be spouting off on the subject :p
     
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