1,000 signatures reached
To: Simon Stevens, CEO of the NHS
Stop gaslighting chronic illness patients
1/ We demand that GPs stop denying the reality of chronic illness patients’ organic conditions.
2/ We demand that 'medically unexplained symptoms' (MUS) is abandoned as a theoretical construct/diagnosis by the NHS.
3/ We demand that GPs are given up-to-date biomedical training about complex, chronic conditions of the body.
4/ We demand that all patients with complex, chronic conditions of the body are given thorough medical tests and examinations; and where available, appropriate pharmacological treatments.
5/ We demand more funding for biomedical research to uncover the pathophysiology of complex, chronic conditions, and to develop off-label or new pharmacological treatments.
2/ We demand that 'medically unexplained symptoms' (MUS) is abandoned as a theoretical construct/diagnosis by the NHS.
3/ We demand that GPs are given up-to-date biomedical training about complex, chronic conditions of the body.
4/ We demand that all patients with complex, chronic conditions of the body are given thorough medical tests and examinations; and where available, appropriate pharmacological treatments.
5/ We demand more funding for biomedical research to uncover the pathophysiology of complex, chronic conditions, and to develop off-label or new pharmacological treatments.
Why is this important?
The NHS is failing patients with complex, chronic conditions of the body like Myalgic Encephalomyelitis, aka Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Lyme Disease, Ehlers-Danlos Syndromes (EDS), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS), Complex Regional Pain Syndrome (CRPS), Inflammatory Bowel Disease (IBD), Irritable Bowel Syndrome (IBS), Endometriosis, and chronic pelvic/back pain.
Patients frequently encounter unknowledgeable GPs who disbelieve, trivialize or psychologize their conditions.
The health profession has an ignoble history of responding to chronic illness patients this way. Its modern origins lie with Freud’s work on hysteria which in recent decades has been repackaged by biopsychosocial ideologues and presented as depression or somatization disorder.
Its latest manifestation in the NHS refers to complex, chronic conditions of the body as ‘medically unexplained symptoms’ (MUS). Proponents of this model are unable to provide any scientific data to support their hypotheses. Furthermore, “the entire concept of somatization is based on the false premise that biomedical science has now reached the point where all physical causes of illness are known.” (K. Popper & N. McIntyre) This is self-evidently not the case. However, the depression/somatization paradigm has found favour with government and policy-makers for financial reasons.
Patients are routinely denied thorough medical tests and examinations, and relevant pharmacological treatments. Instead, they are either dismissed and discouraged from returning to their GP, or offered inappropriate psychological support, usually cognitive behavioural therapy (CBT).
Despite the government’s recent financial support for Covid-19 ‘long haulers’, it’s possible that ‘Long Covid’ patients will also eventually be drawn into this theoretical black hole.
SOURCES:
1. Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome - Geraghty et al. https://jme.bmj.com/content/43/8/549.abstract?s=09
2. Dismissing chronic illness: A qualitative analysis of negative health care experiences - Stephanie McManimen et al. https://pubmed.ncbi.nlm.nih.gov/30829147/
3. When Medical Symptoms Are Dismissed as 'All in Your Head' - David Tuller
https://www.berkeleywellness.com/healthy-community/health-care-policy/article/when-medical-symptoms-are-dismissed-all-your-head?s=09
4. These practitioners have basically been gaslighting their patients for twenty years - Prof. Brian Hughes
https://thesciencebit.net/2019/03/21/if-you-spend-20-years-gaslighting-your-patients-perhaps-you-should-think-twice-before-accusing-them-of-trolling-you/
5. Care providers use the knowledge gap about ME/CFS as an excuse for indolence - Sten Helmfrid
https://www.researchgate.net/publication/339325123_Care_pro
6. IAPT Under the Microscope - David F. Marks
https://journals.sagepub.com/doi/10.1177/1359105318781872
7. It's Time to Pay Attention to Chronic Fatigue Syndrome - Diane O' Leary
https://blogs.bmj.com/medical-ethics/2019/03/05/its-time-to-pay-attention-to-chronic-fatigue-syndrome/
8. "A great deal of the stigma and mistreatment of ME/CFS sufferers comes directly from the medical community. Two things you learn participating in ME/CFS support groups is that everyone is desperate to get well, and everyone has had a bad experience with a doctor." - Naomi Chainey
https://medium.com/the-establishment/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a
9. "A chronically ill person is already in a uniquely vulnerable position, whereby medical professionals act as gatekeepers to proper treatment. Doctors hold an inordinate amount of power over someone with a chronic illness, and it doesn’t take much to tip the balance further in their favor." - Siobhan Simper
https://wames.org.uk/cms-english/a-patients-experience-of-mecfs-and-gaslighting/
10. "The physical toll of long COVID almost always comes with an equally debilitating comorbidity of disbelief... This “medical gaslighting,” whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, is especially bad for women, and even worse for women of color." - Ed Yong
https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
11. "To be clear, gaslighting — the repeated denial of someone’s reality in an attempt to invalidate or dismiss them — is a form of emotional abuse." - Isabella Rosario
https://www.healthline.com/health/mental-health/doctors-gaslighting-patients#1
12. "By appreciating its violent nature, I will argue that gaslighting can cause posttraumatic stress disorder (PTSD)." - Rachel McKinnon
https://books.google.co.uk/books?id=DX6cDwAAQBAJ&lpg=PA285&ots=jUIqXPetto&dq=gaslighting%20chronic%20illness&lr&pg=PA285#v=onepage&q&f=false
13. "There is growing awareness around the prevalence of medical gaslighting, especially amongst female patients. Last week tens of thousands of people took to Twitter to share their horror stories of neglect from medical professionals under the hashtag #PatientsAreNotFaking, following a disturbing viral video that was posted mocking certain patients." - Jo Moss
https://www.ajourneythroughthefog.co.uk/2019/11/have-you-been-a-victim-of-medical-gaslighting/
14. "Having a chronic illness, especially one that might seem invisible to others, can make you vulnerable to gaslighting. Vender pointed out that constant gaslighting, especially from doctors and medical professionals, can make you feel both unsafe and unsupported." - Veronica Vivona
https://themighty.com/2020/08/chronic-illness-gaslighting/
15. Untangling The MUS Web - Anon.
https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/amp/?__twitter_impression=true&s=09
Patients frequently encounter unknowledgeable GPs who disbelieve, trivialize or psychologize their conditions.
The health profession has an ignoble history of responding to chronic illness patients this way. Its modern origins lie with Freud’s work on hysteria which in recent decades has been repackaged by biopsychosocial ideologues and presented as depression or somatization disorder.
Its latest manifestation in the NHS refers to complex, chronic conditions of the body as ‘medically unexplained symptoms’ (MUS). Proponents of this model are unable to provide any scientific data to support their hypotheses. Furthermore, “the entire concept of somatization is based on the false premise that biomedical science has now reached the point where all physical causes of illness are known.” (K. Popper & N. McIntyre) This is self-evidently not the case. However, the depression/somatization paradigm has found favour with government and policy-makers for financial reasons.
Patients are routinely denied thorough medical tests and examinations, and relevant pharmacological treatments. Instead, they are either dismissed and discouraged from returning to their GP, or offered inappropriate psychological support, usually cognitive behavioural therapy (CBT).
Despite the government’s recent financial support for Covid-19 ‘long haulers’, it’s possible that ‘Long Covid’ patients will also eventually be drawn into this theoretical black hole.
SOURCES:
1. Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome - Geraghty et al. https://jme.bmj.com/content/43/8/549.abstract?s=09
2. Dismissing chronic illness: A qualitative analysis of negative health care experiences - Stephanie McManimen et al. https://pubmed.ncbi.nlm.nih.gov/30829147/
3. When Medical Symptoms Are Dismissed as 'All in Your Head' - David Tuller
https://www.berkeleywellness.com/healthy-community/health-care-policy/article/when-medical-symptoms-are-dismissed-all-your-head?s=09
4. These practitioners have basically been gaslighting their patients for twenty years - Prof. Brian Hughes
https://thesciencebit.net/2019/03/21/if-you-spend-20-years-gaslighting-your-patients-perhaps-you-should-think-twice-before-accusing-them-of-trolling-you/
5. Care providers use the knowledge gap about ME/CFS as an excuse for indolence - Sten Helmfrid
https://www.researchgate.net/publication/339325123_Care_pro
6. IAPT Under the Microscope - David F. Marks
https://journals.sagepub.com/doi/10.1177/1359105318781872
7. It's Time to Pay Attention to Chronic Fatigue Syndrome - Diane O' Leary
https://blogs.bmj.com/medical-ethics/2019/03/05/its-time-to-pay-attention-to-chronic-fatigue-syndrome/
8. "A great deal of the stigma and mistreatment of ME/CFS sufferers comes directly from the medical community. Two things you learn participating in ME/CFS support groups is that everyone is desperate to get well, and everyone has had a bad experience with a doctor." - Naomi Chainey
https://medium.com/the-establishment/the-hidden-battle-for-the-rights-of-chronic-fatigue-syndrome-sufferers-cd20bef0f13a
9. "A chronically ill person is already in a uniquely vulnerable position, whereby medical professionals act as gatekeepers to proper treatment. Doctors hold an inordinate amount of power over someone with a chronic illness, and it doesn’t take much to tip the balance further in their favor." - Siobhan Simper
https://wames.org.uk/cms-english/a-patients-experience-of-mecfs-and-gaslighting/
10. "The physical toll of long COVID almost always comes with an equally debilitating comorbidity of disbelief... This “medical gaslighting,” whereby physiological suffering is downplayed as a psychological problem such as stress or anxiety, is especially bad for women, and even worse for women of color." - Ed Yong
https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/
11. "To be clear, gaslighting — the repeated denial of someone’s reality in an attempt to invalidate or dismiss them — is a form of emotional abuse." - Isabella Rosario
https://www.healthline.com/health/mental-health/doctors-gaslighting-patients#1
12. "By appreciating its violent nature, I will argue that gaslighting can cause posttraumatic stress disorder (PTSD)." - Rachel McKinnon
https://books.google.co.uk/books?id=DX6cDwAAQBAJ&lpg=PA285&ots=jUIqXPetto&dq=gaslighting%20chronic%20illness&lr&pg=PA285#v=onepage&q&f=false
13. "There is growing awareness around the prevalence of medical gaslighting, especially amongst female patients. Last week tens of thousands of people took to Twitter to share their horror stories of neglect from medical professionals under the hashtag #PatientsAreNotFaking, following a disturbing viral video that was posted mocking certain patients." - Jo Moss
https://www.ajourneythroughthefog.co.uk/2019/11/have-you-been-a-victim-of-medical-gaslighting/
14. "Having a chronic illness, especially one that might seem invisible to others, can make you vulnerable to gaslighting. Vender pointed out that constant gaslighting, especially from doctors and medical professionals, can make you feel both unsafe and unsupported." - Veronica Vivona
https://themighty.com/2020/08/chronic-illness-gaslighting/
15. Untangling The MUS Web - Anon.
https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/amp/?__twitter_impression=true&s=09
