It is a bit cowardice when he is challenged, that he wanted to remove his review.
Here is copy of it so far.
1 of 17 people found the following review helpful
4.0 out of 5 stars It's all in your head, probably., 18 Jun. 2015
By Brian R. Martin
Verified Purchase(What is this?)
This review is from: It's All in Your Head: True Stories of Imaginary Illness (Kindle Edition)
This short book by a leading neurologist is a sympathetic look at the complex relationship between a doctor and a patient when the latter presents with gross disabling symptoms (paralysis, epileptic-type fits, extreme fatigue etc.) but where no physical cause is detected. The discussion is illustrated via a number of fascinating case histories interdispersed with brief digressions on the historical view of such conditions, although the latter do not always sit comfortably with the case histories. Many reviewers have incorrectly accused the author of trivialising such cases, and the subtitle of the book "True Stories of Imaginary Illness" lends weight to their belief. However, the accusation is false. The discussion of the cases shows that Dr O'Sullivan strongly believes that whatever the origin of the condition, physical or psychosomatic, the symptoms and suffering are real, and the focus should be on treatment, despite the enormous patience required on both sides. She clearly treats her patients with respect and sympathy.
The cases discussed are ones where Dr O'Sullivan considered that the evidence was in favour of a psychosomatic origin, but nowhere do I find that she dismiss the possibility that in future a physical origin for the symptoms may be found, another false charge made against her. She freely admits she does not know all the answers. Her view seems to be that she is doing the best for these patients at the current time and that many (not all) patients do improve under this regime of treatment. None of the reviewers have seriously criticised this approach when used in the cases discussed in nine of the book's ten chapters. The controvsy is in the one chapter on ME, which, as might be expected, has provoked an avalanche of hostile, some even vitriolic, reviews, with very many comments from a single individual, herself a sufferer for 30 years, (who also takes the misguided opportunity on several occasions to plug her novel about someone with ME). It has been suggested that it was a mistake to include ME in the book because `there is ample evidence that it has a physical origin'. On the contrary, I think it would have been a mistake to have omitted it. However, it would perhaps have been better to have given more space to alternative interpretations, even though this book is a personal view.
Yes, there are papers that claim to have found physical anomalies in patients with ME (there is also research that finds nothing anomalous) although when you read the papers the conclusions are couched in typically cautious scientific language and are not so clear cut as reviewers state. But even if they are confirmed, this is still research and there are no proven therapies based on the findings in general use. So if other approaches work for some patients, why not use them until better ones emerge? The negative reviewers do not help their case by sweeping statements, such as "Studies assessing treatments rarely provide useful information...."(!), and referring to the authority of the Countess of Mar, herself a sufferer of chronic fatigue syndrome, who without any apparent scientific/medical training quotes papers she undoubtedly has not read and who would not understand even if she had, or quoting articles in the newsletter of the ME Association, a very worthy organisation, but nevertheless hardly a disinterested one.
I have observed a psychosomatic illness and found this perceptive, well-written book very helpful in helping me understand a difficult situation. I am sure others in this position will also find understanding here.
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Initial post: 18 Jun 2015 16:47:04 BDT
DrEMG says:
Just a thought from a scientist. I'm not persuaded that there was much on ME, as opposed to chronic fatigue syndrome. Given the current definitions, CFS is fairly meaningless nowadays. It means tiredness for at least six months, to a degree and at certain times, with four additional complaints from of a list of eight common symptoms such as headaches and sleep disturbances. If you're menopausal, you'd probably tick all the boxes. Incidence of CFS is much higher than of ME. The main symptom of classic ME (pre-1988) is not fatigue. It's something one can measure objectively. O'Sullivan didn't describe it.
Everyone is entitled to an opinion but I expect scientists to base theirs on best evidence. And that was lacking in relation to both ME and CFS. After two decades of disinformation, anyone who is sick would be forgiven for feeling very miffed when confronted with more.
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In reply to an earlier post on 18 Jun 2015 21:47:35 BDT
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nasim marie jafry says:
Hello, Brian, I would prefer that you do not slight me with your commentary, rather nasty of you. You say I am misguided? The real misguided person here is Suzanne O'Sullivan. It is unfortunate that you don't understand why I'm so passionate about educating others about classic, Ramsay-defined ME. I actually said pretty clearly that I didn't want to use this space to speak about my novel, but it is my weapon against ignorance such as Dr O'Sullivan's - and it is inextricably tied up with my experience of living with the illness. I only suggested people read the novel when I saw that all our commentary about science and biomedical research was being ignored.
Dr EMG has also tried several times on here to explain the differences between classic ME and chronic fatigue, but no one is listening. You have been misinformed by 'Rachel' chapter - a shame if you think you have learned anything. I will never stop trying to educate others about ME, and if Dr O'Sullivan had not insulted all of us with ME I would have no reason to be here.
The ME charities have rallied around us, and I know that Dr Shepherd of ME Association is also writing to Dr O'Sullivan about her misrepresentation.
But I am honestly bored now. And truly exhausted. And I have certainly not been vitriolic in anything I said, has anyone?
But go ahead, please, continue to believe ME is psychosomatic, if that is your wish.
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In reply to an earlier post on 18 Jun 2015 22:15:26 BDT
Brian R. Martin says:
1. You say you do not want to use this space to talk about your novel, but you have done, several times.
2. I DO understand you are passionate in your belief about the cause of MS, but that does not make you right.
3. I have never said what I believe is the cause. I am a scientist, but not a medical scientist. I have no way of knowing, However, I do know that in SOME cases treatment based on the assumption that the cause is psychosomatic does work. So in the absence of definite treatments based on anything else, why not try it. It does not rule out better treatments in the future.
4. Vitriolic? Yes, several reviewers have been just this. One even expressed the hope that the author would contract ME herself so that she could suffer.
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In reply to an earlier post on 18 Jun 2015 22:47:27 BDT
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nasim marie jafry says:
1. Brian, I repeat since you didn't appear to listen: I only suggested people read my novel when I saw that all our commentary about science and biomedical research was being completely ignored... And I don't honestly care if you read my book but it might educate others, that's all. Fiction might be a way in for them. Fiction can often get to truth more easily (all writers know that). My fictionalised narrative is perhaps worth reading to counter Suzanne's narrative.
2. And did you even read my original review? Do you know about the conflation of ME and fatigue? Do you know what Ramsay ME is? Do you know who Melvin Ramsay is? Do you know that CFS is not ME? Does Suzanne know? Do you know pwME are banned from donating blood? Do you know the Norwegian government apologised to its ME patients for the way they had been treated? I assume not.
3. So I repeat for your benefit: I was diagnosed by consultant neurologist Peter Behan post-Coxsackie virus in early 1984 (abnormal muscle biopsy, EMG and many blood tests), he is now retired professor of neurology, he is an actual specialist in ME, unlike Dr O'Sullivan. Did he have false illness beliefs?
Did/do renowned doctors/researchers Ramsay, Dowsett, Speight, Chia, Chaudhuri, Edwards, Enlander, Peterson, Lipkin, Newton, Montoya, Jason, Hornig, VanNess, Fluge and Mella etc etc etc have false illness beliefs?
4. Suzanne has irresponsibly claimed that pwME share 'false illness beliefs' with those who have psychosomatic illness, and she has claimed no matter how long you wait you will not find organic cause - she has done immense harm, you can't see that, obviously.
5. I don't have energy to run around the country promoting my book, and it was seven years ago anyway, but my novel is my weapon so it is *entirely* natural that I will mention it on social media, especially when no one is listening to what we are saying. Responses get buried in threads that is why I have mentioned it more than once. You have no idea, of course, just how much I do raising awareness of ME outside this review thread - you choose instead just to be arrogant towards me. It is not very cool.
6. So I say again, don't give me a hard time for fighting Suzanne's words with my own words. She has offended me greatly, both as someone living with ME, and as a writer.
7. I also say again: no one appears to be reading the science links posted here, they fall on deaf ears. No one, but no one, is listening to what pwME are saying. Maybe time for reviewers here to try to respect the position of people who live with this illness and also the dedicated scientists helping us, instead of offering claptrap about illness beliefs. It really gets weary, having to listen to people like you who privilege your own opinion - with little or no medical knowledge - over those of us who have years/decades of experience of *having* ME. We live it.
8. Also, being rude about Countess of Mar is bit childish, no? She has done a heck of a lot for pwME, we are v grateful to her. She became ill in 80s after exposure to organophosphates in sheep dip. And since you are a scientist, please do read the NIH report if you haven't already: http://annals.org/article.aspx?articleid=2322804
Anyway, I'm done here.
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Posted on 19 Jun 2015 03:17:39 BDT
Loaf Life to the Full says:
Brian, your professedly scientifically objective stance is commendable, but it gives you no insight into the reality of ME for the people who suffer from it.
I have met literally hundreds of persons diagnosed with ME, and although some have psychological comorbidities (mostly not pre-dating the ME), practically all those I have spoken to have had no hesitation in asserting that the disease they are suffering from is a physical, not a psychosomatic, one.
The unanimity of the patients' testimony here as well as the broadly similar array of physical symptoms they all profess to suffer from inevitably militate against the psychosomatic explanation. Careful observation of ME patients over time, of their profound physical incapacity and its consistent failure to resolve in response to psychiatric interventions, as well as the fact that onset of the disease can very frequently be traced to an acute viral infection, only cast yet more doubt on the psychosomatic model.
In this light, your apparent admiration for Dr O'Sullivan's willingness to "treat her patients with respect and sympathy" on the grounds that "whatever the origin of the condition, physical or psychosomatic, the symptoms and suffering are real" is, in the case of ME, not evidence of compassion or understanding, I am afraid; it is evidence only that you, like Dr O'Sullivan, have profoundly misunderstood at least one of two things: either the extent of the suffering that ME patients have no choice but to endure, or the meaning of respect and sympathy.
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Posted on 19 Jun 2015 06:32:07 BDT
BookWorm says:
I seriously believe that people with ME have a genuine right to be angry and upset at the way they are treated by clinicians and the media. CFS is a bucket diagnosis of little value as it includes anything that causes fatigue. ME on the other is proven and accepted to be neurological and while fatigue is a major symptom it is by no means the only major symptom. It is the putting of these two things together that causes so much difficulty for people with ME and denies them proper support whether clinical, practical or financial. It staggers me that even now practitioners fall for mistaking illnesses for which there is no simple diagnostic test, and are still in the process of being understood and discovered as "imaginary". I would have hoped that by now, having done this historically with illnesses such as MS and Parkinsons, they would have learned from that by now. The inclusion of all the hero worship for Professor Wessley was also insensitive, his research has all been about the psychiatric - 'proving' it isn't real. That has taken valuable resources away from research into the physical origins of ME and thus at worst denied, and at best delayed, the development of real understanding of the complex nature of the disease, how to look after patients and developments of drugs that are ME specific. Whilst I applaud the author's sympathetic stance towards people with "imaginary" illnesses, it was a grievous mistake to include ME and actually calls into question whether or not she is fulfilling her GMC obligations of keeping abreast of latest developments.
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In reply to an earlier post on 19 Jun 2015 06:52:24 BDT
Brian R. Martin says:
I can see that this review is just going to generate a host of hostile comments from people with fixed and unalterable views about ME. I have an open mind on the subject, but I don't have time to enter into a long and fruitless debate, so later today I will delete my review and leave it to others. Good luck!
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In reply to an earlier post on 19 Jun 2015 15:22:28 BDT
Sue B says:
Thanks for your balanced view in support of ME sufferers.
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In reply to an earlier post on 19 Jun 2015 16:01:10 BDT
Sue B says:
I appreciate your relatively balanced review Brian, but I don't think the comments are really hostile just very frustrated and upset that the "psychosomatic" view always gets the prime media slot, and the dominance of that narrative has significantly diverted funds and progress in biomedical research - otherwise, we may well have more definitive evidence of the underlying causes. ( Your own comments about Countess Marr seemed unnecessarily hostile and presumptive actually). Yes a proportion of those with CFS respond to varying degrees to psychiatric/psychological interventions, (very few fully recover) but a large percentage of misdiagnosis (about 40%) and the broad selection criteria also throw in uncertainties about whether there are some patients with more psychological and others with more biophysical conditions. Only more biomedical research can build on the strong indications from exisiting evidence, which has been neglected in favour of psychiatric studies (which are not always scientifically sound either - and no I am not a scientist but I am capable of understanding conclusions, summaries and general reports). I can assure you, I would prefer if my illness was psychosomatic - at least I would have some chance of improving my health and receiving treatment that helped (like many I have been down that road to no avail). It is therefore particularly hard that one may be perceived as not really wanting to recover, when one fails to respond to psychological interventions, despite every effort and positive determination. Sorry for adding to your burden of comments and I really do not intend any personal hostility, I wish you well and thank you for your open mind on this matter.
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In reply to an earlier post on 19 Jun 2015 17:04:22 BDT
Douglass Dumbrille says:
Brian, I suggest you google the article "The End ME/CFS Project: History Taking Root", so you can see what a severely ill ME/CFS patient looks like (it's called ME/CFS here in the US).
And this patient, Whitney Davis, is the son of one of the world's leading geneticists, yet he continues to worsen.
Then come back and tell us it's all in his head.
Here is copy of it so far.
1 of 17 people found the following review helpful
4.0 out of 5 stars It's all in your head, probably., 18 Jun. 2015
By Brian R. Martin
Verified Purchase(What is this?)
This review is from: It's All in Your Head: True Stories of Imaginary Illness (Kindle Edition)
This short book by a leading neurologist is a sympathetic look at the complex relationship between a doctor and a patient when the latter presents with gross disabling symptoms (paralysis, epileptic-type fits, extreme fatigue etc.) but where no physical cause is detected. The discussion is illustrated via a number of fascinating case histories interdispersed with brief digressions on the historical view of such conditions, although the latter do not always sit comfortably with the case histories. Many reviewers have incorrectly accused the author of trivialising such cases, and the subtitle of the book "True Stories of Imaginary Illness" lends weight to their belief. However, the accusation is false. The discussion of the cases shows that Dr O'Sullivan strongly believes that whatever the origin of the condition, physical or psychosomatic, the symptoms and suffering are real, and the focus should be on treatment, despite the enormous patience required on both sides. She clearly treats her patients with respect and sympathy.
The cases discussed are ones where Dr O'Sullivan considered that the evidence was in favour of a psychosomatic origin, but nowhere do I find that she dismiss the possibility that in future a physical origin for the symptoms may be found, another false charge made against her. She freely admits she does not know all the answers. Her view seems to be that she is doing the best for these patients at the current time and that many (not all) patients do improve under this regime of treatment. None of the reviewers have seriously criticised this approach when used in the cases discussed in nine of the book's ten chapters. The controvsy is in the one chapter on ME, which, as might be expected, has provoked an avalanche of hostile, some even vitriolic, reviews, with very many comments from a single individual, herself a sufferer for 30 years, (who also takes the misguided opportunity on several occasions to plug her novel about someone with ME). It has been suggested that it was a mistake to include ME in the book because `there is ample evidence that it has a physical origin'. On the contrary, I think it would have been a mistake to have omitted it. However, it would perhaps have been better to have given more space to alternative interpretations, even though this book is a personal view.
Yes, there are papers that claim to have found physical anomalies in patients with ME (there is also research that finds nothing anomalous) although when you read the papers the conclusions are couched in typically cautious scientific language and are not so clear cut as reviewers state. But even if they are confirmed, this is still research and there are no proven therapies based on the findings in general use. So if other approaches work for some patients, why not use them until better ones emerge? The negative reviewers do not help their case by sweeping statements, such as "Studies assessing treatments rarely provide useful information...."(!), and referring to the authority of the Countess of Mar, herself a sufferer of chronic fatigue syndrome, who without any apparent scientific/medical training quotes papers she undoubtedly has not read and who would not understand even if she had, or quoting articles in the newsletter of the ME Association, a very worthy organisation, but nevertheless hardly a disinterested one.
I have observed a psychosomatic illness and found this perceptive, well-written book very helpful in helping me understand a difficult situation. I am sure others in this position will also find understanding here.
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Initial post: 18 Jun 2015 16:47:04 BDT
DrEMG says:
Just a thought from a scientist. I'm not persuaded that there was much on ME, as opposed to chronic fatigue syndrome. Given the current definitions, CFS is fairly meaningless nowadays. It means tiredness for at least six months, to a degree and at certain times, with four additional complaints from of a list of eight common symptoms such as headaches and sleep disturbances. If you're menopausal, you'd probably tick all the boxes. Incidence of CFS is much higher than of ME. The main symptom of classic ME (pre-1988) is not fatigue. It's something one can measure objectively. O'Sullivan didn't describe it.
Everyone is entitled to an opinion but I expect scientists to base theirs on best evidence. And that was lacking in relation to both ME and CFS. After two decades of disinformation, anyone who is sick would be forgiven for feeling very miffed when confronted with more.
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In reply to an earlier post on 18 Jun 2015 21:47:35 BDT
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nasim marie jafry says:
Hello, Brian, I would prefer that you do not slight me with your commentary, rather nasty of you. You say I am misguided? The real misguided person here is Suzanne O'Sullivan. It is unfortunate that you don't understand why I'm so passionate about educating others about classic, Ramsay-defined ME. I actually said pretty clearly that I didn't want to use this space to speak about my novel, but it is my weapon against ignorance such as Dr O'Sullivan's - and it is inextricably tied up with my experience of living with the illness. I only suggested people read the novel when I saw that all our commentary about science and biomedical research was being ignored.
Dr EMG has also tried several times on here to explain the differences between classic ME and chronic fatigue, but no one is listening. You have been misinformed by 'Rachel' chapter - a shame if you think you have learned anything. I will never stop trying to educate others about ME, and if Dr O'Sullivan had not insulted all of us with ME I would have no reason to be here.
The ME charities have rallied around us, and I know that Dr Shepherd of ME Association is also writing to Dr O'Sullivan about her misrepresentation.
But I am honestly bored now. And truly exhausted. And I have certainly not been vitriolic in anything I said, has anyone?
But go ahead, please, continue to believe ME is psychosomatic, if that is your wish.
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In reply to an earlier post on 18 Jun 2015 22:15:26 BDT
Brian R. Martin says:
1. You say you do not want to use this space to talk about your novel, but you have done, several times.
2. I DO understand you are passionate in your belief about the cause of MS, but that does not make you right.
3. I have never said what I believe is the cause. I am a scientist, but not a medical scientist. I have no way of knowing, However, I do know that in SOME cases treatment based on the assumption that the cause is psychosomatic does work. So in the absence of definite treatments based on anything else, why not try it. It does not rule out better treatments in the future.
4. Vitriolic? Yes, several reviewers have been just this. One even expressed the hope that the author would contract ME herself so that she could suffer.
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In reply to an earlier post on 18 Jun 2015 22:47:27 BDT
Last edited by the author 6 hours ago
nasim marie jafry says:
1. Brian, I repeat since you didn't appear to listen: I only suggested people read my novel when I saw that all our commentary about science and biomedical research was being completely ignored... And I don't honestly care if you read my book but it might educate others, that's all. Fiction might be a way in for them. Fiction can often get to truth more easily (all writers know that). My fictionalised narrative is perhaps worth reading to counter Suzanne's narrative.
2. And did you even read my original review? Do you know about the conflation of ME and fatigue? Do you know what Ramsay ME is? Do you know who Melvin Ramsay is? Do you know that CFS is not ME? Does Suzanne know? Do you know pwME are banned from donating blood? Do you know the Norwegian government apologised to its ME patients for the way they had been treated? I assume not.
3. So I repeat for your benefit: I was diagnosed by consultant neurologist Peter Behan post-Coxsackie virus in early 1984 (abnormal muscle biopsy, EMG and many blood tests), he is now retired professor of neurology, he is an actual specialist in ME, unlike Dr O'Sullivan. Did he have false illness beliefs?
Did/do renowned doctors/researchers Ramsay, Dowsett, Speight, Chia, Chaudhuri, Edwards, Enlander, Peterson, Lipkin, Newton, Montoya, Jason, Hornig, VanNess, Fluge and Mella etc etc etc have false illness beliefs?
4. Suzanne has irresponsibly claimed that pwME share 'false illness beliefs' with those who have psychosomatic illness, and she has claimed no matter how long you wait you will not find organic cause - she has done immense harm, you can't see that, obviously.
5. I don't have energy to run around the country promoting my book, and it was seven years ago anyway, but my novel is my weapon so it is *entirely* natural that I will mention it on social media, especially when no one is listening to what we are saying. Responses get buried in threads that is why I have mentioned it more than once. You have no idea, of course, just how much I do raising awareness of ME outside this review thread - you choose instead just to be arrogant towards me. It is not very cool.
6. So I say again, don't give me a hard time for fighting Suzanne's words with my own words. She has offended me greatly, both as someone living with ME, and as a writer.
7. I also say again: no one appears to be reading the science links posted here, they fall on deaf ears. No one, but no one, is listening to what pwME are saying. Maybe time for reviewers here to try to respect the position of people who live with this illness and also the dedicated scientists helping us, instead of offering claptrap about illness beliefs. It really gets weary, having to listen to people like you who privilege your own opinion - with little or no medical knowledge - over those of us who have years/decades of experience of *having* ME. We live it.
8. Also, being rude about Countess of Mar is bit childish, no? She has done a heck of a lot for pwME, we are v grateful to her. She became ill in 80s after exposure to organophosphates in sheep dip. And since you are a scientist, please do read the NIH report if you haven't already: http://annals.org/article.aspx?articleid=2322804
Anyway, I'm done here.
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Posted on 19 Jun 2015 03:17:39 BDT
Loaf Life to the Full says:
Brian, your professedly scientifically objective stance is commendable, but it gives you no insight into the reality of ME for the people who suffer from it.
I have met literally hundreds of persons diagnosed with ME, and although some have psychological comorbidities (mostly not pre-dating the ME), practically all those I have spoken to have had no hesitation in asserting that the disease they are suffering from is a physical, not a psychosomatic, one.
The unanimity of the patients' testimony here as well as the broadly similar array of physical symptoms they all profess to suffer from inevitably militate against the psychosomatic explanation. Careful observation of ME patients over time, of their profound physical incapacity and its consistent failure to resolve in response to psychiatric interventions, as well as the fact that onset of the disease can very frequently be traced to an acute viral infection, only cast yet more doubt on the psychosomatic model.
In this light, your apparent admiration for Dr O'Sullivan's willingness to "treat her patients with respect and sympathy" on the grounds that "whatever the origin of the condition, physical or psychosomatic, the symptoms and suffering are real" is, in the case of ME, not evidence of compassion or understanding, I am afraid; it is evidence only that you, like Dr O'Sullivan, have profoundly misunderstood at least one of two things: either the extent of the suffering that ME patients have no choice but to endure, or the meaning of respect and sympathy.
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Posted on 19 Jun 2015 06:32:07 BDT
BookWorm says:
I seriously believe that people with ME have a genuine right to be angry and upset at the way they are treated by clinicians and the media. CFS is a bucket diagnosis of little value as it includes anything that causes fatigue. ME on the other is proven and accepted to be neurological and while fatigue is a major symptom it is by no means the only major symptom. It is the putting of these two things together that causes so much difficulty for people with ME and denies them proper support whether clinical, practical or financial. It staggers me that even now practitioners fall for mistaking illnesses for which there is no simple diagnostic test, and are still in the process of being understood and discovered as "imaginary". I would have hoped that by now, having done this historically with illnesses such as MS and Parkinsons, they would have learned from that by now. The inclusion of all the hero worship for Professor Wessley was also insensitive, his research has all been about the psychiatric - 'proving' it isn't real. That has taken valuable resources away from research into the physical origins of ME and thus at worst denied, and at best delayed, the development of real understanding of the complex nature of the disease, how to look after patients and developments of drugs that are ME specific. Whilst I applaud the author's sympathetic stance towards people with "imaginary" illnesses, it was a grievous mistake to include ME and actually calls into question whether or not she is fulfilling her GMC obligations of keeping abreast of latest developments.
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In reply to an earlier post on 19 Jun 2015 06:52:24 BDT
Brian R. Martin says:
I can see that this review is just going to generate a host of hostile comments from people with fixed and unalterable views about ME. I have an open mind on the subject, but I don't have time to enter into a long and fruitless debate, so later today I will delete my review and leave it to others. Good luck!
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In reply to an earlier post on 19 Jun 2015 15:22:28 BDT
Sue B says:
Thanks for your balanced view in support of ME sufferers.
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In reply to an earlier post on 19 Jun 2015 16:01:10 BDT
Sue B says:
I appreciate your relatively balanced review Brian, but I don't think the comments are really hostile just very frustrated and upset that the "psychosomatic" view always gets the prime media slot, and the dominance of that narrative has significantly diverted funds and progress in biomedical research - otherwise, we may well have more definitive evidence of the underlying causes. ( Your own comments about Countess Marr seemed unnecessarily hostile and presumptive actually). Yes a proportion of those with CFS respond to varying degrees to psychiatric/psychological interventions, (very few fully recover) but a large percentage of misdiagnosis (about 40%) and the broad selection criteria also throw in uncertainties about whether there are some patients with more psychological and others with more biophysical conditions. Only more biomedical research can build on the strong indications from exisiting evidence, which has been neglected in favour of psychiatric studies (which are not always scientifically sound either - and no I am not a scientist but I am capable of understanding conclusions, summaries and general reports). I can assure you, I would prefer if my illness was psychosomatic - at least I would have some chance of improving my health and receiving treatment that helped (like many I have been down that road to no avail). It is therefore particularly hard that one may be perceived as not really wanting to recover, when one fails to respond to psychological interventions, despite every effort and positive determination. Sorry for adding to your burden of comments and I really do not intend any personal hostility, I wish you well and thank you for your open mind on this matter.
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In reply to an earlier post on 19 Jun 2015 17:04:22 BDT
Douglass Dumbrille says:
Brian, I suggest you google the article "The End ME/CFS Project: History Taking Root", so you can see what a severely ill ME/CFS patient looks like (it's called ME/CFS here in the US).
And this patient, Whitney Davis, is the son of one of the world's leading geneticists, yet he continues to worsen.
Then come back and tell us it's all in his head.
