worldbackwards
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It doesn't actually make anyone any better. Got to hand it to her, can't get more poorly understood than that.O'Sullivan said:
-
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"Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"
- Thread starter Daisymay
- Start date
I can't access the article or the majority of the comments; I can read Doc Torrants' though.Comment from a doctor under the article
One request I've always wanted to make of the people who never seem to weary of pointing out how vociferous PwME are in their denial that they have a psychological condition is that they give us an explanation for why, of all the various psychosomatic cases discussed in O'Sullivan's book, it is only PwME who have been voicing their objections to her ideas, and in overwhelmingly large numbers.
Can people like Doc Torrants and O'Sullivan not put two and two together and consider for one minute that all these people with this one specific condition of ME/CFS insisting that they are physically, not psychologically, ill, and the contrasting and deafening silence of people with the other conditions discussed in the book, might actually indicate that PwME do after all have a physical, not a psychological, condition? Or does the psychiatric model of ME/CFS assume that the condition is unique among psychosomatic disorders in that, apart from making its sufferers think they are physically ill when they are not, it also makes them pathologically outspoken and belligerent in defence of their beliefs?
Just for the record, I have read all of O'Sullivan's book.
Article in full:
"It was late when Suzanne O’Sullivan was called to the hospital. One of her patients, Lorna, was writhing in severe pain, which escalated into full-blown seizures. The woman was thrashing so hard on the floor that two doctors and a nurse were struggling to protect her: the only option seemed to be to prep her for an emergency operation to address the cause. “Why didn’t you give this girl treatment for her seizures!” the anaesthetist shouted when she arrived at the panicked scene.
O’Sullivan, a senior neurologist, “suppressed the words that were perilously close to the tip of my tongue” and didn’t reply. Instead, she told all the medical staff, some now nearly crying at the woman’s trauma, to leave the room. She already knew what Lorna was suffering from. Five minutes later, Lorna was sitting up in a chair: upset and confused but physically healthy.
I have met a lot of Lornas,” O’Sullivan writes in It’s All in Your Head, which won the Wellcome Book Prize on Monday night.
It’s not only a beautifully written book, in homage to other neurologists turned authors such as Sigmund Freud and Oliver Sacks, it’s also a book to start a revolution in healthcare, to make us see what no one has seen so clearly before.
I have met a lot of Lornas,” O’Sullivan writes in It’s All in Your Head, which won the Wellcome Book Prize on Monday night.
It’s not only a beautifully written book, in homage to other neurologists turned authors such as Sigmund Freud and Oliver Sacks, it’s also a book to start a revolution in healthcare, to make us see what no one has seen so clearly before.
O’Sullivan is the first doctor to sound this alarm: the modern healthcare system is juddering to a halt because of people experiencing physical illnesses that have no physical cause. Their endless quest for treatment may be costing the NHS double that of even a burden such as diabetes, yet they are looking in the wrong place for relief. Their suffering is real but has been invented by their unconscious.
If you’re like me, then you’ll find the sheer scale of this problem hard to grapple with. But these strange maladies — so reminiscent of something from Freud’s casebook — are blocking up hospital clinics and surgeries across the land.
I meet O’Sullivan at the Wellcome Collection in London after her win; she sips black coffee and claims to be the worse for wear (she originates from Dublin and had celebrated with her large family after winning the £30,000 prize), but her grasp of the figures is precise. From the moment she became a consultant in 2004, she realised that no one was talking about these patients, let alone properly beginning to treat them. And yet the crisis is endemic.
“It was most of the people coming into hospital with really bad seizures,” she says. They would run every test, and all would come out clear. No physical cause.
These people are not consciously faking. O’Sullivan has courted some hostile attacks from ME sufferers for lumping their affliction into this group of psychosomatic illnesses. However, her stance is sympathetic. They are not hypochondriacs, malingerers or crazy. That their illness originates in the unconscious does not mean it isn’t disabling; in fact they are often profoundly disabled and live miserable lives. You can no more tell them to “buck up” than say to someone with depression: “It’s all in your head.”
I always say to them, ‘What you’re going through is real,’ ” says O’Sullivan, who is now an epilepsy expert at the National Hospital in London, an international centre of excellence in neurology.
Something in their unconscious has flicked a switch to turn on symptoms that mimic serious illnesses. These patients cannot consciously turn off their illnesses but, unlike other physical diseases, the cure is psychological, and poorly understood.
O’Sullivan is in charge of six beds at the Epilepsy Society specialist ward. She says roughly half to all of them in any given week will be filled by people who will go on to be diagnosed with “dissociative seizures”, ie caused by their unconscious mind and not physical epilepsy. Studies show that people who have psychosomatic complaints cost the healthcare system twice as much as those who do not. Standard treatment doesn’t help, so they spend their lives in and out of hospitals.
In my epilepsy clinic, it’s about one in three people, but as they tend to have more frequent and longer seizures than people with epilepsy, 70 per cent of the people I work with coming into hospital with seizures don’t have epilepsy. They have more seizures, and more out-of-control seizures.
And that’s normal. Every single doctor pretty much spends a third of their time seeing people who don’t have physical disease and trying to reassure them about it. A study in America found that [these patients] were costing the American healthcare system $256 billion [£177 billion]. That was compared to diabetes, a common serious illness, at $132 billion.”
As O’Sullivan notes in her book: “Thirty per cent of those who go to a rheumatology clinic suffer with pain for which medicine cannot account. Fifty per cent of those who go to a general medical clinic have symptoms that cannot be explained. Sixty per cent of women who go to see a gynaecologist have symptoms for which no cause is found. The impact of our emotional wellbeing on our health is not a trifling problem.”
Could taking it seriously also save the NHS? “I think if you treat people with this early on, you can completely avert years of hospital admissions and tests. I am in no doubt that to improve their care will save the NHS money.”
It has never been totted up how much it costs the NHS. One study of three GP practices in London found that people with severe psychosomatic illnesses, who had been disabled for more than six months and were probably not working and never would be, formed 1 per cent of patients. They each had an average of 20 appointments with their GP in a year and five at hospitals, and underwent multiple investigations. Just 227 such patients from those three practices cost the NHS £500,000 that year, but they would, O’Sullivan says, in all likelihood go on to cost the same or more every year without improvement or answers. Extrapolating the cost for the whole of the UK is mind-boggling.
“It’s a standard part of our work but it’s really frustrating,” O’Sullivan says. “Medical schools never talked about what you do with someone with dizziness or a headache that isn’t getting better but you can’t find any medical explanation? Say, ‘Good news, your tests are normal, go home and enjoy your life’? Often, they can’t.”
So this book is the first of its kind. Well, in the modern era anyway: O’Sullivan says the case histories from Freud’s book Studies on Hysteria “could be any of my patients”. This is a bold thing to say, given how hard the feminist movement argued against Freud’s dismissal of women’s problems as fantasy. Yet O’Sullivan believes that Freud was right in connecting the body and the mind so powerfully.
In Studies on Hysteria, Freud said if an idea can generate movement why can’t an idea hinder movement? That just makes sense to me,” she says.
ME often starts with a viral illness. What keeps you sick is the way you react
Each chapter of her book deals with a different patient, and it is easy at first to giggle, just as O’Sullivan admits that she did when a junior doctor. There’s a woman who is apparently blind but draws her a perfect thank-you card. Or one whose hand is paralysed into a claw but when a treatment is given relaxes it within minutes, rather than the days the treatment usually takes. There are endless cases of seizures, paralysis and pain for which batteries of tests cannot find any physical cause.
Hang on, I say, how can you be so sure? Isn’t medicine littered with patients whose doctors dismissed them, at their peril? O’Sullivan shakes her head. Once an illness has been properly investigated and deemed psychosomatic, misdiagnosis is very rare, long-term studies now show.
Instead, O’Sullivan works on how best to deliver the news, because most of her patients get upset, saying, “You think I’m crazy?” or “I’m not making it up.” She assures them that they are no more able to control their symptoms than she can stop her heart racing before a speech. Her encounter in the book with “Rachel”, an ME sufferer, may be the most tense.
What I believe if I’m being uncowardly and completely honest,” says O’Sullivan, “is that ME often starts with a viral illness, then what keeps you sick is the way you react to that illness. Sometimes, the way we behave in response to illness or injury is dysfunctional, and that keeps us ill for longer. Unfortunately, I know some people are upset that I’ve said that, but I’m trying to say that these disorders, like dissociative seizures, paralysis and ME, are absolutely life-destroying illnesses, and we should give them more respect and pay them more attention in research.”
What isn’t explained, since so much of this problem is little understood, is why about 70 per cent of sufferers of psychosomatic illnesses are female. Sexual abuse in childhood is one risk factor, O’Sullivan says, in psychosomatic seizures in particular.
But she believes that there is sexism in how much it is dismissed. “This is such a predominantly female disorder, I can’t help feeling that has contributed to the way it has been neglected. People are more comfortable looking at a woman and saying, ‘She’s hysterical, snap out of it.’ ”
Ironically, the risk to these people is the conventional treatment for the illness they think they have. Only about 30 per cent of the people with psychosomatic seizures will recover, far lower than for epilepsy. Yet doctors often wash their hands of them, when new kinds of expert physio and psychotherapy can work.
“If you don’t get the right help, you will probably end up lifelong disabled. That’s what’s so shocking. It’s curable, but we’re only helping this tiny number. Given how common this is, in your standard hospital there should be a specialist service, but in this country there is such a small group of medics interested in this that I could name them all, fewer than 20 people.”
Be honest, I ask her, does she feel a dip in sympathy when she finds out that a patient does not have a disease of physical origin? She looks pained.
“I actually feel worse for them. It’s so much harder for me to explain and [the patient] to understand. You have a worse chance of getting better, and the treatment is much harder work. The one thing it doesn’t do is kill people, but it’s absolutely life-destroying.”
It’s All In Your Head by Suzanne O’Sullivan is published by Chatto & Windus for £8.99
"It was late when Suzanne O’Sullivan was called to the hospital. One of her patients, Lorna, was writhing in severe pain, which escalated into full-blown seizures. The woman was thrashing so hard on the floor that two doctors and a nurse were struggling to protect her: the only option seemed to be to prep her for an emergency operation to address the cause. “Why didn’t you give this girl treatment for her seizures!” the anaesthetist shouted when she arrived at the panicked scene.
O’Sullivan, a senior neurologist, “suppressed the words that were perilously close to the tip of my tongue” and didn’t reply. Instead, she told all the medical staff, some now nearly crying at the woman’s trauma, to leave the room. She already knew what Lorna was suffering from. Five minutes later, Lorna was sitting up in a chair: upset and confused but physically healthy.
I have met a lot of Lornas,” O’Sullivan writes in It’s All in Your Head, which won the Wellcome Book Prize on Monday night.
It’s not only a beautifully written book, in homage to other neurologists turned authors such as Sigmund Freud and Oliver Sacks, it’s also a book to start a revolution in healthcare, to make us see what no one has seen so clearly before.
I have met a lot of Lornas,” O’Sullivan writes in It’s All in Your Head, which won the Wellcome Book Prize on Monday night.
It’s not only a beautifully written book, in homage to other neurologists turned authors such as Sigmund Freud and Oliver Sacks, it’s also a book to start a revolution in healthcare, to make us see what no one has seen so clearly before.
O’Sullivan is the first doctor to sound this alarm: the modern healthcare system is juddering to a halt because of people experiencing physical illnesses that have no physical cause. Their endless quest for treatment may be costing the NHS double that of even a burden such as diabetes, yet they are looking in the wrong place for relief. Their suffering is real but has been invented by their unconscious.
If you’re like me, then you’ll find the sheer scale of this problem hard to grapple with. But these strange maladies — so reminiscent of something from Freud’s casebook — are blocking up hospital clinics and surgeries across the land.
I meet O’Sullivan at the Wellcome Collection in London after her win; she sips black coffee and claims to be the worse for wear (she originates from Dublin and had celebrated with her large family after winning the £30,000 prize), but her grasp of the figures is precise. From the moment she became a consultant in 2004, she realised that no one was talking about these patients, let alone properly beginning to treat them. And yet the crisis is endemic.
“It was most of the people coming into hospital with really bad seizures,” she says. They would run every test, and all would come out clear. No physical cause.
These people are not consciously faking. O’Sullivan has courted some hostile attacks from ME sufferers for lumping their affliction into this group of psychosomatic illnesses. However, her stance is sympathetic. They are not hypochondriacs, malingerers or crazy. That their illness originates in the unconscious does not mean it isn’t disabling; in fact they are often profoundly disabled and live miserable lives. You can no more tell them to “buck up” than say to someone with depression: “It’s all in your head.”
I always say to them, ‘What you’re going through is real,’ ” says O’Sullivan, who is now an epilepsy expert at the National Hospital in London, an international centre of excellence in neurology.
Something in their unconscious has flicked a switch to turn on symptoms that mimic serious illnesses. These patients cannot consciously turn off their illnesses but, unlike other physical diseases, the cure is psychological, and poorly understood.
O’Sullivan is in charge of six beds at the Epilepsy Society specialist ward. She says roughly half to all of them in any given week will be filled by people who will go on to be diagnosed with “dissociative seizures”, ie caused by their unconscious mind and not physical epilepsy. Studies show that people who have psychosomatic complaints cost the healthcare system twice as much as those who do not. Standard treatment doesn’t help, so they spend their lives in and out of hospitals.
In my epilepsy clinic, it’s about one in three people, but as they tend to have more frequent and longer seizures than people with epilepsy, 70 per cent of the people I work with coming into hospital with seizures don’t have epilepsy. They have more seizures, and more out-of-control seizures.
And that’s normal. Every single doctor pretty much spends a third of their time seeing people who don’t have physical disease and trying to reassure them about it. A study in America found that [these patients] were costing the American healthcare system $256 billion [£177 billion]. That was compared to diabetes, a common serious illness, at $132 billion.”
As O’Sullivan notes in her book: “Thirty per cent of those who go to a rheumatology clinic suffer with pain for which medicine cannot account. Fifty per cent of those who go to a general medical clinic have symptoms that cannot be explained. Sixty per cent of women who go to see a gynaecologist have symptoms for which no cause is found. The impact of our emotional wellbeing on our health is not a trifling problem.”
Could taking it seriously also save the NHS? “I think if you treat people with this early on, you can completely avert years of hospital admissions and tests. I am in no doubt that to improve their care will save the NHS money.”
It has never been totted up how much it costs the NHS. One study of three GP practices in London found that people with severe psychosomatic illnesses, who had been disabled for more than six months and were probably not working and never would be, formed 1 per cent of patients. They each had an average of 20 appointments with their GP in a year and five at hospitals, and underwent multiple investigations. Just 227 such patients from those three practices cost the NHS £500,000 that year, but they would, O’Sullivan says, in all likelihood go on to cost the same or more every year without improvement or answers. Extrapolating the cost for the whole of the UK is mind-boggling.
“It’s a standard part of our work but it’s really frustrating,” O’Sullivan says. “Medical schools never talked about what you do with someone with dizziness or a headache that isn’t getting better but you can’t find any medical explanation? Say, ‘Good news, your tests are normal, go home and enjoy your life’? Often, they can’t.”
So this book is the first of its kind. Well, in the modern era anyway: O’Sullivan says the case histories from Freud’s book Studies on Hysteria “could be any of my patients”. This is a bold thing to say, given how hard the feminist movement argued against Freud’s dismissal of women’s problems as fantasy. Yet O’Sullivan believes that Freud was right in connecting the body and the mind so powerfully.
In Studies on Hysteria, Freud said if an idea can generate movement why can’t an idea hinder movement? That just makes sense to me,” she says.
ME often starts with a viral illness. What keeps you sick is the way you react
Each chapter of her book deals with a different patient, and it is easy at first to giggle, just as O’Sullivan admits that she did when a junior doctor. There’s a woman who is apparently blind but draws her a perfect thank-you card. Or one whose hand is paralysed into a claw but when a treatment is given relaxes it within minutes, rather than the days the treatment usually takes. There are endless cases of seizures, paralysis and pain for which batteries of tests cannot find any physical cause.
Hang on, I say, how can you be so sure? Isn’t medicine littered with patients whose doctors dismissed them, at their peril? O’Sullivan shakes her head. Once an illness has been properly investigated and deemed psychosomatic, misdiagnosis is very rare, long-term studies now show.
Instead, O’Sullivan works on how best to deliver the news, because most of her patients get upset, saying, “You think I’m crazy?” or “I’m not making it up.” She assures them that they are no more able to control their symptoms than she can stop her heart racing before a speech. Her encounter in the book with “Rachel”, an ME sufferer, may be the most tense.
What I believe if I’m being uncowardly and completely honest,” says O’Sullivan, “is that ME often starts with a viral illness, then what keeps you sick is the way you react to that illness. Sometimes, the way we behave in response to illness or injury is dysfunctional, and that keeps us ill for longer. Unfortunately, I know some people are upset that I’ve said that, but I’m trying to say that these disorders, like dissociative seizures, paralysis and ME, are absolutely life-destroying illnesses, and we should give them more respect and pay them more attention in research.”
What isn’t explained, since so much of this problem is little understood, is why about 70 per cent of sufferers of psychosomatic illnesses are female. Sexual abuse in childhood is one risk factor, O’Sullivan says, in psychosomatic seizures in particular.
But she believes that there is sexism in how much it is dismissed. “This is such a predominantly female disorder, I can’t help feeling that has contributed to the way it has been neglected. People are more comfortable looking at a woman and saying, ‘She’s hysterical, snap out of it.’ ”
Ironically, the risk to these people is the conventional treatment for the illness they think they have. Only about 30 per cent of the people with psychosomatic seizures will recover, far lower than for epilepsy. Yet doctors often wash their hands of them, when new kinds of expert physio and psychotherapy can work.
“If you don’t get the right help, you will probably end up lifelong disabled. That’s what’s so shocking. It’s curable, but we’re only helping this tiny number. Given how common this is, in your standard hospital there should be a specialist service, but in this country there is such a small group of medics interested in this that I could name them all, fewer than 20 people.”
Be honest, I ask her, does she feel a dip in sympathy when she finds out that a patient does not have a disease of physical origin? She looks pained.
“I actually feel worse for them. It’s so much harder for me to explain and [the patient] to understand. You have a worse chance of getting better, and the treatment is much harder work. The one thing it doesn’t do is kill people, but it’s absolutely life-destroying.”
It’s All In Your Head by Suzanne O’Sullivan is published by Chatto & Windus for £8.99
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JaimeS
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'Tis a far, far better thing you do, Aurator. I think my brain would run out my ears.
-J
JaimeS
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"...the seizure had passed. However, because of post hoc reasoning, O'Sullivan felt confident in her assumption that it was as a result of her calming presence."
-J
The case history of Rachel is very interesting. Do we think that the information here is sufficiently anonymised to prevent the identification of the patient? If so, is this to be regarded as work of fiction? How is anyone to know where fact stops and fiction starts? Why should anyone take any of the contents seriously? Should the information have been withheld to ensure patient confidentiality?
alex3619
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Why is it that so many doctors automatically conflate "no detected disease" with "no disease exists"? How can they be so irrational? The history of medicine is full of examples where this is proven to be a false claim - just because a disease process exists does not mean that its easy to detect, especially if the technology to detect it is not even developed yet, or not widely available.
Great thinking!
These are the catch 22 situations they routinely put us in.
@fartinscience should be asked these questions!
alex3619
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Let me make a prediction - if medicine continues to embrace irrational conclusions and nonscience then not only will things not improve much, but the profession will fall into greater and greater disrepute.
Perhaps if there were such a person as "Rachel", and she were able to identify herself, she would have legitimate cause for making a formal complaint to the GMC. Perhaps she would even have a justifiable case for compensation against author and publisher. Perhaps what is needed is a campaign for Rachel to make herself known to someone guaranteeing greater confidentiality.
Of course, Rachel might be entirely fictitious.
Of course, Rachel might be entirely fictitious.
chipmunk1
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It is known that Freud misrepresented these case histories. Many turned out to have cancer, epilepsy or neurological disease. He did not cure or improve any of them.
In the same year when Studies on Hysteria was published he was doing so much coke that he had to have his nose opened surgically to be able to breathe(or do more coke).
So yes it makes a lot of sense.
If this were true you would get ME after any injury. Why would it be limited to viral infections?
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Daisymay
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Quite so.
One would hope that everyone described in the book gave fully informed written consent for their case to be published in this book?
But were they really informed of the potential risk of their identity being revealed and how far and wide their tale would be told?
What are the GMC rules on this?
Yet release of fully anonymised PACE data is so far not allowed?
Indeed!!
Confidentiality GMC rules - click on right for pdf
http://www.gmc-uk.org/guidance/ethical_guidance/confidentiality.asp
chipmunk1
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Rachel probably died a few years ago.
I am sorry to hear that. I presume that you have information which, in the circumstances, it is preferred not to disclose.
It is potentially even more damning if the patient referred to in such condescending terms by her doctor died, from whatever cause, at what must have been a tragically young age. The matter clearly needs a certain delicacy of approach.
chipmunk1
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No I made this up. Sadly this could have been the case and this happens all the time.
http://eliotslater.org/index.php/ps...nts-diagnosed-as-suffering-from-hysteria-1965
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tinacarroll27
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Imagine the response to a book that said cancer or Aids was all in the mind in the face of all the facts. The world would consider that person to be an idiot. We need to get the truth out. Once the truth is out these people would know they just couldn't get away with it. People like O'Sullivan are opportunistic sharks! She knows she can get away with it! What we need is a propaganda machine that overwhelms their lies.....couldn't we raise money to get a PR company to get the truth out on our behalf. I know there are companies in the UK that do this and there must be in the USA as well. It's shocking that the wellcome trust has given her a book prize for this rubbish! The stigma runs deep!
Mrs Sowester
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Please excuse my waffle, I'm foggy as thick seamist and struggling to follow arguments at the moment but:
I wonder how the statistics work with ME in her proposed somatic illness group? If one in 500 people(?) globally present with the same set of ME symptoms how does that correspond with the numbers for other proposed psychosomatic illness groups, like the non-epileptic fit people? Or the other examples?
Group hysteria must have a pattern of spread that has been studied. Like the teenage girls in America who developed Tourette's for a while. Or Morgellons(?). For a cluster to be a cluster I'd imagine the subjects need to know of each other and/or be aware of the specific symptoms.
If O'S is right why isn't 1 in 500 people imagining themselves to be blind? Or deaf? Or twitching? Or having tremors?
Surely her hypothesis can be disproved with data analysis.
PS. I know my ME isn't group hysteria as I'd never known anyone with ME or the symptoms prior to getting it myself and didn't consult Dr Google until I'd been diagnosed by a neurologist and had blood tests and MRI. But then, we all know this to be true of our own ME so it doesn't need saying within our group! I'm just pondering how it must be possible to prove our point.
PPS. Wasn't sure about adding Morgellons, I've only read one article which proposed that catching an itch was akin to catching a yawn and sounded plausible - but I believed the hype about BPS ME till I got it!
I wonder how the statistics work with ME in her proposed somatic illness group? If one in 500 people(?) globally present with the same set of ME symptoms how does that correspond with the numbers for other proposed psychosomatic illness groups, like the non-epileptic fit people? Or the other examples?
Group hysteria must have a pattern of spread that has been studied. Like the teenage girls in America who developed Tourette's for a while. Or Morgellons(?). For a cluster to be a cluster I'd imagine the subjects need to know of each other and/or be aware of the specific symptoms.
If O'S is right why isn't 1 in 500 people imagining themselves to be blind? Or deaf? Or twitching? Or having tremors?
Surely her hypothesis can be disproved with data analysis.
PS. I know my ME isn't group hysteria as I'd never known anyone with ME or the symptoms prior to getting it myself and didn't consult Dr Google until I'd been diagnosed by a neurologist and had blood tests and MRI. But then, we all know this to be true of our own ME so it doesn't need saying within our group! I'm just pondering how it must be possible to prove our point.
PPS. Wasn't sure about adding Morgellons, I've only read one article which proposed that catching an itch was akin to catching a yawn and sounded plausible - but I believed the hype about BPS ME till I got it!
The fact that I took you seriously is perhaps an indication of the awareness of the possibilities. I thought our limited energies were best directed at the point, rather than each other.