Deepwater
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Indeed. She reminds me horribly of Mrs. Coulter in 'His Dark Materials', for those who have read that novel.
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Prof Esther Crawley's paper defines the symptoms of severe ME as PRS
- Thread starter Countrygirl
- Start date
Indeed. She reminds me horribly of Mrs. Coulter in 'His Dark Materials', for those who have read that novel.
Yes indeed. There is a thread for it at: http://forums.phoenixrising.me/inde...that-the-me-association-leave-the-cmrc.52762/
slysaint
Senior Member
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- 2,125
I watched the 30 minute version of 'Voices from the shadows' again yesterday and sent the link to a number of people I emailed about the NICE guidelines petition.
"Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections. (See Bristol Watershed event videos)
A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations very similar to those shown in the film are taking place right now, both in the UK and in other countries."
"
‘Trial By Error’ – by David Tuller.
‘Voices from the Shadows’ shows the devastating effects some patients have suffered following exercise programmes. These treatments of Graded Exercise Therapy and Cognitive Behavioural Therapy, used as the primary treatment for CFS and ME on the basis that patients have become de-conditioned from resting too much, caught in a cycle of boom and bust as […]
"
The ending comment by Dr Speight sums up that if the disease hadn't been hijacked by the psychs 30 years ago we would probably know the cause by now.
I really think this should be shared more.
http://voicesfromtheshadowsfilm.co.uk/
eta: this is no longer available on DVD.
eta 2: the link to the Bristol Watershed is also well worth a look.
"Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the reality of this physical illness and the severe relapse or exacerbation of symptoms that can be caused by increased physical or mental activity, over exposure to stimuli and by further infections. (See Bristol Watershed event videos)
A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations very similar to those shown in the film are taking place right now, both in the UK and in other countries."
"
‘Trial By Error’ – by David Tuller.
‘Voices from the Shadows’ shows the devastating effects some patients have suffered following exercise programmes. These treatments of Graded Exercise Therapy and Cognitive Behavioural Therapy, used as the primary treatment for CFS and ME on the basis that patients have become de-conditioned from resting too much, caught in a cycle of boom and bust as […]
"
The ending comment by Dr Speight sums up that if the disease hadn't been hijacked by the psychs 30 years ago we would probably know the cause by now.
I really think this should be shared more.
http://voicesfromtheshadowsfilm.co.uk/
eta: this is no longer available on DVD.
eta 2: the link to the Bristol Watershed is also well worth a look.
Yes, that is exactly what she would say - that there's a genetic factor making you think you have symptoms, rather than a gene causing the symptoms. Dr Brian Walitt and Leorey Saligan from the ongoing NIH study did exactly that in a prior fibromyalgia study, in combination with grossly reducing the threshold for catastrophization.
So, there's a genetic link for hypochondria AND we have almost identical symptoms, even though we didn't meet until I was 21... Got it!
All the gaslighting go around is driving me crazy....
there's plenty of BOTH going around .... eg., the incompetents cause all the commotion so less ppl notice the sinister, providing them w the freedom to carry out their handiwork
I was talking to my maternal side aunt, and she was asking me some about cfs, I told her a bit and I said, you know I grew up watching you all w your bizarre symptoms, so I thought It was normal, she told me what do you mean, I explain like my mom passes out left and right, she said ohhh I have something very bizarre happen to me, when I experience intense pain, I pass out : she described exactly the same scenarios that happens to me, In all 40 years we never talked about that and she was not to know that I pass out when I twist an ankle for example, and she described passing out on bizarre scenarios same as me (and my mom). Is interesting !!!!
Cinders66
Senior Member
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- 494
I noticed in the recent Crawley et al how to manage kids paper she says about 10% presented with difficulty eating or something. It wasnt presented particularly sympathetically and went on to say how low food intake then impacted fatigue and mood more. It reminded me a bit of the NICE guidelines section where it said those very severe needed to be warned of the dangers of bedrest, as if it was something of choice. I think we really need to try to learn exactly whether Crawley recognises very severe ME in kids and also untreatable/entrenched severe ME (improvement might be possible but not necessarily in response to steady behavioural intervention).
I think Severe ME is always going to run into problems with researchers who approach our illness more from as fatigue level because the symptoms are so many and so incapacitating and those Drs are coming from it as if yeah I know you're really tired. Pervasive refusal symptoms do sound scarily like very severe ME where Drs just label you as refusing because you "won't" (read can't) comply with their rehabilitation ideas. If a child was only psychiatrically or mentally ill I see no reason why PRS rehabilitation should be so slow or fraught with risks if they over exert.
I think Severe ME is always going to run into problems with researchers who approach our illness more from as fatigue level because the symptoms are so many and so incapacitating and those Drs are coming from it as if yeah I know you're really tired. Pervasive refusal symptoms do sound scarily like very severe ME where Drs just label you as refusing because you "won't" (read can't) comply with their rehabilitation ideas. If a child was only psychiatrically or mentally ill I see no reason why PRS rehabilitation should be so slow or fraught with risks if they over exert.
It is interesting... My adoptive family has the opposite genes as me... They have MARATHONERS galore... one of my uncles ran the local marathon thru his 70's.. lol... They all have a ton of energy and never get sick... I can't remember a single day when my mom spent the entire day in bed... Her brother is in his late 80's and still practicing law part time.. However, they have lots of cancer, alcoholism, and, IMO, personality disorders ... I was always acutely aware that there was something wrong w me, although I was well enough to hide it from my family... Only I knew the discrepancy between what I was motivated to do, and what I was actually able to do...I couldn't wait to be old enough to take myself to the doctor and try to figure it out...
On the other hand, my biological mother seems extremely complacent w her illness... She doesn't make any effort to get better at all... She married someone who cares for her so that she can just go to bed when she needs to ... Her daughter is the same... I can't even imagine it.. ... We don't have POTS, which would push me over the edge.. MCAS, chronic and sometimes severe sinus problems, digestive problems, fatigue, and terrible joint pain and aches, and brain fog... She and her daughter don't seem to fight it at all...
jimells
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- northern Maine
I don't know how anybody can read this stuff and avoid the conclusion that Crawley & Company have committed grave criminal offenses.
Personally, I prefer not to associate with known criminals. Apparently the MEA is more tolerant about such things.
Personally, I prefer not to associate with known criminals. Apparently the MEA is more tolerant about such things.
PRS is a diagnosis EC keeps up her sleeve to punish any child who has the effrontery not to get better when she tells them to. Despite casting her net as wide as possible, and excluding those with severe symptoms, sometimes a child with M.E. actually slips into one of her studies. If their health deteriorates despite having been told to ignore their symptoms and just be normal and healthy, they must be rediagnosed with something else, ie Pervasive Refusal to Get Better When EC Tells You Syndrome, so that EC can maintain her 100% cure rate for CFS. The alternative, that she hasn't got the answer to everything and isn't always right, would be unthinkable. PRS is an appropriate diagnosis for such children because it allows anything they say to be ignored and for them to be bullied without redress, thus serving them bloody well right.
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Rowe et al’s 2017 paediatric primer does a nice job of distinguishing ME/CFS from PRS and is available here http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full. It says:
“Psychiatric Illnesses That May be Misdiagnosed in Young Patients with ME/CFS
Lack of familiarity with the clinical diagnostic features of ME/CFS and skepticism about its existence has often resulted in a misdiagnosis with one of the following conditions:
• Factitious disorder by proxy (Munchausen syndrome by proxy, fabricated or induced illness) (FDP/MSBP).
• School refusal (school phobia).
• Pervasive refusal syndrome (PRS).
• Somatoform disorder.”
The primer goes through each of the above misdiagnoses one by one. The section on PRS reads as follows:
“Pervasive Refusal Syndrome
This condition describes a young patient who has despaired of any help from medical care and has lost all hope, as if wanting to die and, therefore, rejects medical care. It is extremely rare. Individual case reports are still being published. The young person refuses food and fluids, and might pull out IV cannulas and nasogastric tubes. It has occurred in young patients with neoplastic disease sickened by too many interventions and it has been described subsequent to sexual abuse. PRS is sometimes wrongly diagnosed in very severe cases of ME/CFS, when the young patient is physically incapable of sitting up or even swallowing. In contrast to PRS, the young person with severe ME/CFS usually wants to get better and co-operates with medical help such as tube feeding. Management of the two conditions consists of the avoidance of stress, medical help with nutrition, assistance with living confined to bed, and an empathetic form of management to which the young person gives consent. A mistaken diagnosis of PRS in a patient with very severe ME/CFS can result in transfer of care to a psychiatrist whose management might include detrimental regimes, such as forced exercise and separation from family.”
The full primer is here http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full (online version with option to download pdf at top right).
“Psychiatric Illnesses That May be Misdiagnosed in Young Patients with ME/CFS
Lack of familiarity with the clinical diagnostic features of ME/CFS and skepticism about its existence has often resulted in a misdiagnosis with one of the following conditions:
• Factitious disorder by proxy (Munchausen syndrome by proxy, fabricated or induced illness) (FDP/MSBP).
• School refusal (school phobia).
• Pervasive refusal syndrome (PRS).
• Somatoform disorder.”
The primer goes through each of the above misdiagnoses one by one. The section on PRS reads as follows:
“Pervasive Refusal Syndrome
This condition describes a young patient who has despaired of any help from medical care and has lost all hope, as if wanting to die and, therefore, rejects medical care. It is extremely rare. Individual case reports are still being published. The young person refuses food and fluids, and might pull out IV cannulas and nasogastric tubes. It has occurred in young patients with neoplastic disease sickened by too many interventions and it has been described subsequent to sexual abuse. PRS is sometimes wrongly diagnosed in very severe cases of ME/CFS, when the young patient is physically incapable of sitting up or even swallowing. In contrast to PRS, the young person with severe ME/CFS usually wants to get better and co-operates with medical help such as tube feeding. Management of the two conditions consists of the avoidance of stress, medical help with nutrition, assistance with living confined to bed, and an empathetic form of management to which the young person gives consent. A mistaken diagnosis of PRS in a patient with very severe ME/CFS can result in transfer of care to a psychiatrist whose management might include detrimental regimes, such as forced exercise and separation from family.”
The full primer is here http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full (online version with option to download pdf at top right).
dangermouse
Senior Member
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- 430
It beggars belief. If I didn't know better I'd think that I was reading a supernatural fiction novel...one of those that cause nightmares!
RogerBlack
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By understanding the law.
We might wish what they are doing to be criminal, but without outright statements like 'I intentionally hurt patients by knowingly lying', there is no possibility at all of a guilty verdict, as they have not actually broken the law.
I note again that Wakefields paper, and his subsequent defence of it has caused thousands of deaths.
The sole action against him was to remove his medical licence.
Charles Dickens said:
Hip
Senior Member
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- 17,871
In 2013 there were only three people in the UK who were diagnosed with pervasive refusal syndrome — this article details the young girl who developed these symptoms after contracting a viral ear infection, and became the third person diagnosed.
The fact that her condition appeared after a viral infection fits in with what we know about ME/CFS, which is usually a virally triggered diseases.
I bet nobody bothered to do any viral testing on the girl, to see if she might have elevated titers to any of the viruses commonly linked to ME/CFS, such as coxsackievirus B, echovirus, Epstein-Barr virus, etc.
With such testing, proper medical treatment could have been attempted (eg, antivirals, IVIG, etc).
The fact that her condition appeared after a viral infection fits in with what we know about ME/CFS, which is usually a virally triggered diseases.
I bet nobody bothered to do any viral testing on the girl, to see if she might have elevated titers to any of the viruses commonly linked to ME/CFS, such as coxsackievirus B, echovirus, Epstein-Barr virus, etc.
With such testing, proper medical treatment could have been attempted (eg, antivirals, IVIG, etc).
HowToEscape?
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The two are complementary. A veneer of incompetence makes a fine distraction for a sinister nature underneath. Being good at what you do is a form of generosity, it's extra work and usually more extra work than extra reward. Being incompetent at what you do is a form of being a sociopath; you blow off your responsibility towards your work which means that you're blowing off your responsibility towards others.
one of the core challenges in ME/CFS is that it's a multi system illness, so if you don't see someone who specializes in CFS (and good ppl are very to find!) then you go to specialists who treat discrete symptoms... Ea of these specialists sees your illness through the narrow lens of their own training without seeing the bigger picture.... It's a form of confirmation bias... So, if you see a psychiatrist, they are going to tell you that you have a psychiatric illness... Ironically, you'd think that a psychiatrist would have more self awareness (emotional intelligence) when it comes to identifying their own cognitive distortions (confirmation bias).
Snowdrop
Rebel without a biscuit
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