Stonebird

A New Vision

Psychiatry, not just the PACE trial, has set back knowledge, understanding, treatment and recognition of people with ME and other poorly diagnosed illnesses for decades, encouraging weak diagnostic criteria that identifies no one, a focus upon a vague symptom of fatigue that is not necessarily even present in ME and  non -investigation of serious symptoms. The influence of psychiatry upon the neurological disease, Myalgic Encephalomyelitis, dates from way before the PACE trial, which failed to back up any of the claims psychiatry makes about the effectiveness of a psychosocial approach, which NICE unfortunately bought into, heavily skewed by psychiatric representation on the Guideline Development Committee for CG53 in 2007. One of the problems facing the creation of new NICE guidance is that the biomedical expertise needed to create an appropri- ate and safe biomedical pathway is not there in the UK, because of decades of psychiatric sway and influence. There is no biomedical national pathway or specialist ME Centre. The only test that was developed to identify the enterovirus, the VP1 test has long been withdrawn. Practitioners are consequently free to decide whether they even believe ME exists, apart from in the mind of the sufferer and is a physical disease at all, because of the lack of commitment by the government, the health service and NICE, to protect those with it, specifically, under the  diagnosis of the WHO neurological classification G93.10.3 ME patients are left at the mercy of a psychiatric- inspired fatigue service, offering danger- ously inappropriate graded activity management or graded exercise programs and cognitive behaviour therapy, aided by the conflation of ME with CFS, despite one being more narrowly defined and specific and the other being more widely and loosely inter- preted, focusing primarily on fatigue. Their presumption is that the illness has continued due to wrong thought and decondition- ing. If they are too ill to leave their homes, patients are simply left for decades, with little or no appropriate, safe , clinical input, poorly investigated, open to misinterpretation, lacking in physical support, proper recognition and wrong or no treatment. No one with an ME diagnosis is currently safe, all the time this confusion and conflation continues. Due to poor diagnosis, poor identification criteria such as the vague Oxford criteria, and poor commitment to investigate, it is unlikely that everyone with a diagnosis actually has ME at all.

Misinterpretation and mistreatment

As my wife describes. “From becoming ill, I was immediately open to misinterpretation, misdiagnosis, misrepresentation and mistreatment, harmed repeatedly by a lack of under- standing of the underlying physiology of my illness, vulnerable to the current belief of any doctor or consultant that I encountered, starting with my initial GP and the neurologists I saw. The impact of psychiatric misinterpretation continues today unabated, it must be recog- nised for what it is, this includes the widespread damaging effect that it has had on health provision and attitude towards ME patients, from decades of misrepresentation of a neu- rological disease, with multi-system dysfunction, as a mental health condition treatable by CBT and GET. If there is to be any genuine change of direc- tion in how medical care is presented and appropriate clinical support is to be offered to people with this seriously disabling dis- ease, psychiatry and the disastrous psychosocial fatigue clinics must be re- moved from first hand involvement in ME. The underlying attitudes cannot be accepted any longer, if genuine support and input for the physical disease is to be offered. Key to producing any new NICE guideline is agreeing a specific definition for the specific disease we are talking about. Myalgic Encephalomyelitis. The abandonment of the name Chronic Fatigue Syndrome along with all the vague and variable criteria used to describe and supposedly diagnose it must happen. A tight set of detailed criteria needs setting in place, medical consultants must be able to diagnose using them, until a biomedical test can be produced or the VP1 is reinstated. There are people working on this round the world. We can only hope there is an urgent breakthrough. The acknowledgment of the full symptom experience must be recognised in order to keep patients safe and not open to psychiatric abuse and mistreatment through wrongful psychiatric misinterpretation. The symptoms recognised by NICE are minimal to the full experience of ME. They were ignored by NICE previously, presumably to be treated as comorbid conditions outside its remit, leaving patients in no man’s land dangerously vulnerable  to misdiagnosis as MUS ( Medically Unexplained Symptoms), the latest attempt by the Royal Colleges of GP’s and Psychiatry to misinform commissioners and create mental health services for ME by other means. The recent JCPMH 2017 report, flies in the face of current NICE guidance, the WHO classifi- cation, G93.3 Myalgic Encephalomyelitis and UK Government policy, disseminating to Health Commissioners that ME is a mental health condition. It seems to be a flagrant attempt to strengthen the psychiatric position and continue to provide potentially danger- ous treatment pathways for ME. A critical concern for NICE is the need to address the funda- mental underlying attitude of practitioners towards people with an ME diagnosis. There must be a new vision. There must be new recognition of the physical illness and its manifestation alongside the intense physical experience it causes for decades. The message must go out to all service providers that ME is a deadly, serious disease. Too many people in too many different persuasions are influenced by psychiatric misrepresentation. There must be no more psychosocial management or unrealistic overly positive prognosis, no pretense of unrealistic recovery which does not help the ill person deal with the reality of a long term disabling illness or get the long term support and recognition deserved and so much needed. There is no cure. This needs acknowledging, so that thorough, honest, symptom investigation may begin to shine more light on how to help people or enable them to cope and understand their illness better. It does not mean continuing down the psychosocial path as an acceptable alternative to nothing to offer. Rather, nothing being offered, with honesty and integrity plus a willingness to investigate, support and aim to alleviate the worst suffering if possible, would be better, than being offered potentially dangerous treatments or simply being dismissed as too ill to help and given nothing or less ill or given wrong advice and pushed to do more than is safe.

Invisibility

The house and bed-bound become invisible. The most severely ill, left chronically neglected, are at constant risk of harm or deterioration or misinterpretation and psychiatric abuse, even sectioning. Those who are not so severely ill, but perhaps more so than those who can easily attend clinics, remain semi-visible and are likely to be described by clinicians who do not see the worst suffering as having Se- vere ME, when this is not necessarily the case. The most severe experiences are not necessarily seen nor fully comprehended, people who push themselves to see consultants, then deteriorate significantly afterwards as a conse- quence, once home again may also not be seen in their worst or post-exertional state. If people can only be seen when at their apparent best, the true nature of the disease and symptoms and their experience will be invisible. Furthermore, if tests can only be done in moments of potential tolerance, the outcomes may be very different. The issue may be easily missed if measurements fluctuate depending on the presence of symptoms, such as Periodic Paralysis. The real illness disappears from view and those with it are endangered by a system that does not recognise them, does not know how to help them and is likely to judge or blame patients rather than own their own culpability and responsibility. Or worse still, say their is no cause for their symptoms. Patients meanwhile are expected to jump through endless hoops in order to obtain vital benefits and care, reassessments that are impossible to bear and endless proofs that are difficult to provide, are demanded, yet at the same time, under psychiatric influence, the necessary tests are proscribed by NICE. This must change in the new guidance. Psychiatry misrepresents ME as “medically unexplained”, when in fact it is “medically ignored”, misinforming doctors and health professionals. Despite writing to the govern- ment, the Health Service, NICE and the Royal Colleges and several charities involved in the JCMPH, we could find no willingness to change the misinformation and no one willing to deal with the error to ensure Commissioners were made aware of it.  The clinical input required is unavailable unless you have the money to pay privately and even then it may be unreliable or unsafe. Everyone is different and needs an individual approach. Anyone could have a missed alternative or comorbid diagnosis under the current regime. Regulated biomedical training should be standardised and provided, but only if it is correct and free from psychiatric misinterpretation. The real question is who will do it and ensure it is correct? Down the years we have witnessed and experienced being harmed by ignorant practition- ers, being misinterpreted, being downplayed by ignorant neurologists, being lied about and misreported , left without thorough investigations or coherent explanations as a consequence. My wife says, “The worst betrayal was by people who insisted they could help, then harmed horrendously instead and left me so damaged that I was literally tortured by normality, was completely cut off from everyone and everything and harmed by every sound and interaction, made a million times worse than my very severe level of illness to start with, which made life intolerable for us both and left us with no hope, traumatised and judged wrongly. I still have not recovered many years on, even to my previous level. Trust is a fragile thing. The trust of those with ME needs completely rebuilding. Psychiatric involvement and influence has to be acknowledged as inappropriate and not wanted. A strong message by NICE must be given on this point and followed through, for the new guidelines to be effective and of help. We have all been massively let down so far; the new NICE guidelines must begin to restore trust and faith in the medical profession and the health service in its dealings with ME specifically. There  must be a biomedical focus and acknowledgement of the true nature of the disease.

The dangers of a fatigue-based biomedical service

Mistreatment and harm can also come from a biomedical approach too, not just a psychi- atrically biased one. This needs acknowledg- ing. The physiological issues must be addressed much better than they presently are and the importance of acknowledging not knowing what to do is also essential, if it is the case. But there must be better testing, investigation and explanation, in order to understand the underlying physiology of in- dividuals and offer realistic support, not pressure to improve , that is unrealistic and unlikely. Interventions must be medically appropriate and based on understanding the physical illness and the dangers to the body and prac- ticality of physically coping, posed by physical deterioration. It is not acceptable to limit the recognition of symptoms, to focus on a vague symptom of fatigue and to continue to not acknowledge the true disease and separate it from chronic fatigue once and for all. Neither is it acceptable to promote the idea that pain, sleep and rest are easily controllable. It simply has never been our experience. Because the reality of Very Severe ME is seen in fewer people than the mild and moderate categories, this should not mean that this reality is simply ignored and not adequately acknowledged , represented or endangered. Anyone can deteriorate to this level. That is the truly frightening issue that seems to be downplayed or ignored. Not everyone recovers from a deterioration. Deteriorations can be horrendously, indescribably tormenting and so much worse than could be imagined. The guidance for the most ill must be about meeting individual need, recognising the person’s vulnerability, fragility and the potential danger of any interven- tion. Knowing how to care, in this context, becomes extremely important, in order to try and avoid further deterioration of health.  Pacing, for example, should not be universally demanded because the most ill are too ill to even do this. To insist on Pacing across the board is to harm those barely hanging onto life, the most Severely Affected, for whom pacing is difficult to impossible. An honest Risk Assessment for any intervention is essential, even physical contact or dialogue can cause deterioration in the most ill and must be included  as an integral component of the new NICE Guideline. Much better protection must be in place for all levels of illness to ensure that deterioration is not triggered inadvertently by ignorant health providers, even if they mean well. Meaning well is not enough. Good, safe practice and treatment pathways are essential. The true nature of the disease must be acknowledged this time and language must not be open to misinterpretation to allow the continued misunderstanding and mistreatment or neglect of this severely disabling disease. A commitment to a biomedical pathway must be made. Any other attitude must surely be quashed and noted as unacceptable. A recognition of the inappropriate influence and misrepresentation by the psychosocial pathway must be made. ME is not like any other illness, in that anything at any time can make the person worse and untold long term harm can be done from seemingly tiny, even insignificant interventions, let alone bigger interactions and treatment options, if the person is ever pushed beyond their ability or tolerance or inappropriately treated, with dire long term consequences. What is required, universally, is the truth of the illness, which so far has been missing. A biomedical home bound visiting pathway must be created for the most ill, including the possibility of consultant input at home. But that must not be accepted as a way to interfere and then potentially harm the most vulnerable, should a psychosocial path not be aban- doned. It would be extremely dangerous for the most vulnerable to be treated as mentally ill or in need of psychiatric home provided therapies; that would be a completely  unaccept- able outcome. There needs to be a driving commitment to recognise and specifically identify the most serious and severe symptoms, such as paralysis and muscle spasms alongside the myriad  severe environmental hypersensitivities that people with ME experience, with guidance on how to genuinely help with these tormenting and isolating symptoms. How to help people access health care whilst homebound simply must be addressed. A new approach is required not just be- cause it seems like it would be a good idea, but because it is essential. It needs  recognising  that people can die from wrong inter- vention. This needs to be seriously raised as an issue. No more pretence that ME does not kill. More than this, ongoing clinical support should be offered over years, as long as needed and appropriate aids pro- vided easily to those in need. New things need considering and creating even, to take into account the specific needs imposed upon the person extremely weak, frail and hypersensitive. Even with excellent GP support- which is not a given for this disease- there is such a climate of negation and psychiatric influence in the UK, that there is no way of knowing whether a GP or a referral is safe for a patient.  There is no way of knowing whether the doctor or consultant is aware enough and cor- rectly medically trained about ME to be open minded enough to listen to the patient and run serious tests, rather than simply dismiss the person as having a mental health problem due to psychiatric influence and/or training input or whether co-morbid conditions will be ignored, overlooked or not recognised. There needs to be a safe nursing protocol in place and safe guidance, based upon a partner- ship model.  A Moment Approach to care is essential, to maximise the opportunity to meet need as safely as possible with such a complex disease. NICE guidance needs to  acknowledge that for some people the hospital environment is too dangerous to engage with, but that there still needs to be medical input and an appropriate localised home bound service provided throughout the country. People need sensitive aware care, not wrong judgment, risk of sectioning or mismanagement due to lack of comprehension of how seriously ill they are. Being too ill to even attend a hospital or be in any environment that could dangerously comprise very fragile health or undergo most tests is a vulnerable and difficult place to be. Even taking a blood test may be agony and extremely difficult to get a sample. The after affect devastating. Unless NICE changes it approach to encompass the needs of all, we fear it may be  too late for some people;   those who cannot access testing or consultants in hospital settings, those  open to misinterpretation that they are refusing help, because the system does not under- stand or recognise the illness, Myalgic Encephalomyelitis.

 In Summary

What is actually required, but is not provided, due to complete lack of recognition of ME as a real ongoing physical illness as opposed to a fatigue condition, due to deconditioning and wrong thought, is: A biomedical pathway and service that provides accurate diagnosis, honest prognosis, appropriate in depth investigations and testing and interpretation, full symptom recognition with ongoing appropriate clinical support, and possible individual symptom treatment, not psychiatric management techniques which deny the true disease and risk worsening symptoms or deteriorating patients health. A nationally provided biomedical service that offers input to the home bound and  bed bound and those who would deteriorate significantly attempting to attend outpatient clinics ....in situ, rather than the nothing, which is currently provided for the most severely ill. A biomedical consultant and GP home visiting service to help the most ill.  Appropriate hospital environment for those able to attend, yet at risk of deterioration from the effort and impact. Flexibility and home testing where possible is required. New aids and equipment, specially designed, for people with ME. Understanding, acceptance, help and ongoing support, safe guidance, risk assessment, proper investigation and special, relevant aids to be provided, along with clinical explanation, for the acute hypersensitivities to the environment which patients experience. An understanding by medical staff of the need to understand the danger posed by wearing perfumed products and the need to respect a fragrance free environments for many people with ME. Home visits or appointments, flexibly timed to when the person may best tol- erate them. A commitment to train doctors and con- sultants appropriately in a biomedical interpretation and understanding of the illness. A commitment to use the correct name only for the correct disease and illness manifestation; Myalgic Encephalomyelitis. A determination to better investigate, recognise, treat and support all symptoms. Tight clinical criteria. A fundamental change in attitude. An acknowledgment that meaning well is not the same as doing well. None of this is currently available. In this way psychiatry has influenced and enabled the burying of a serious physical disease with severe if not fatal conse- quences, as a vague fatigue condition, with no possibility of righting this wrong in the system. Its sway must be recognised and totally removed from ME, for there to be any hope of a safe way forward. © Stonebird 2018 Greg & Linda Crowhurst
“The abandonment of the name Chronic Fatigue Syndrome along with all the vague and variable criteria used to describe and sup- posedly diagnose it must happen.”
 Psychiatry misrepresents ME as “medically unexplained”, when in fact it is “medically ignored”, mis- informing doctors and health professionals.

Stonebird

A New Vision

Psychiatry, not just the PACE trial, has set back knowledge, understand- ing, treatment and recognition of people with ME and other poorly di- agnosed illnesses for decades, encouraging weak diagnostic criteria that identifies no one, a focus upon a vague symptom of fatigue that is not necessarily even present in ME and  non -investigation of serious symptoms. The influence of psychiatry upon the neurological disease, Myalgic En- cephalomyelitis, dates from way before the PACE trial, which failed to back up any of the claims psychiatry makes about the effectiveness of a psychoso- cial approach, which NICE unfortu- nately bought into, heavily skewed by psychiatric representation on the Guideline Development Committee for CG53 in 2007. One of the problems facing the creation of new NICE guidance is that the bio- medical expertise needed to create an appropriate and safe biomedical pathway is not there in the UK, be- cause of decades of psychi- atric sway and influence. There is no biomedical national path- way or specialist ME Centre. The only test that was developed to identify the enterovirus, the VP1 test has long been withdrawn. Practitioners are conse- quently free to decide whether they even believe ME exists, apart from in the mind of the sufferer and is a physi- cal disease at all, because of the lack of commitment by the government, the health service and NICE, to protect those with it, specifically, under the  di- agnosis of the WHO neurological classification G93.10.3 ME patients are left at the mercy of a psychiatric- inspired fatigue service, of- fering dangerously inappropriate graded activity management or graded exercise programs and cognitive behav- iour therapy, aided by the conflation of ME with CFS, despite one being more narrowly defined and specific and the other being more widely and loosely interpreted, focusing primarily on fatigue. Their presumption is that the illness has continued due to wrong thought and deconditioning. If they are too ill to leave their homes, patients are simply left for decades, with little or no appro- priate, safe , clinical input, poorly investigated, open to misinterpretation, lacking in physical support, proper recognition and wrong or no treatment. No one with an ME diagnosis is cur- rently safe, all the time this confusion and conflation continues. Due to poor diagnosis, poor identification criteria such as the vague Oxford criteria, and poor commitment to investigate, it is unlikely that everyone with a diagnosis actually has ME at all.

Misinterpretation and

mistreatment

As my wife describes. “From becoming ill, I was immediately open to misinter- pretation, misdiagnosis, misrepresenta- tion and mistreatment, harmed repeatedly by a lack of understanding of the underlying physiology of my illness, vulnerable to the current belief of any doctor or consultant that I encountered, starting with my initial GP and the neu- rologists I saw. The impact of psychiatric misinterpreta- tion continues today unabated, it must be recognised for what it is, this in- cludes the widespread damaging effect that it has had on health provision and attitude towards ME patients, from decades of misrepresentation of a neu- rological disease, with multi-system dysfunction, as a mental health condi- tion treatable by CBT and GET. If there is to be any genuine change of direction in how medical care is pre- sented and appropriate clinical support is to be offered to people with this seri- ously disabling disease, psychiatry and the disastrous psychosocial fatigue clin- ics must be removed from first hand involvement in ME. The underlying attitudes cannot be ac- cepted any longer, if genuine support and input for the physical disease is to be offered. Key to producing any new NICE guide- line is agreeing a specific definition for the specific disease we are talking about. Myalgic Encephalomyelitis. The abandonment of the name Chronic Fatigue Syndrome along with all the vague and variable criteria used to de- scribe and supposedly diagnose it must happen. A tight set of detailed criteria needs set- ting in place, medical consultants must be able to diagnose using them, until a biomedical test can be produced or the VP1 is reinstated. There are people working on this round the world. We can only hope there is an urgent breakthrough. The acknowledgment of the full symp- tom experience must be recognised in order to keep patients safe and not open to psychiatric abuse and mistreatment through wrongful psychiatric misinterpretation. The symptoms recognised by NICE are minimal to the full experience of ME. They were ignored by NICE previously, presumably to be treated as comorbid conditions outside its remit, leaving pa- tients in no man’s land dangerously vulnerable  to misdiagnosis as MUS ( Medically Unexplained Symp- toms), the latest attempt by the Royal Colleges of GP’s and Psychiatry to misin- form commissioners and create mental health services for ME by other means. The recent JCPMH 2017 report, flies in the face of current NICE guidance, the WHO classification, G93.3 Myalgic En- cephalomyelitis and UK Government policy, disseminating to Health Commis- sioners that ME is a mental health condition. It seems to be a flagrant at- tempt to strengthen the psychiatric position and continue to provide poten- tially dangerous treatment pathways for ME. A critical concern for NICE is the need to address the fundamental underlying at- titude of practitioners towards people with an ME diagnosis. There must be a new vision. There must be new recognition of the physical illness and its manifestation alongside the intense physical experi- ence it causes for decades. The message must go out to all service providers that ME is a deadly, serious disease. Too many people in too many different persuasions are influenced by psychiatric misrepresentation. There must be no more psychosocial management or unrealistic overly posi- tive prognosis, no pretense of unrealis- tic recovery which does not help the ill person deal with the reality of a long term disabling illness or get the long term support and recognition deserved and so much needed. There is no cure. This needs acknowledging, so that thor- ough, honest, symptom investigation may begin to shine more light on how to help people or enable them to cope and understand their illness better. It does not mean continuing down the psychosocial path as an acceptable al- ternative to nothing to offer. Rather, nothing being offered, with hon- esty and integrity plus a willingness to investigate, support and aim to alleviate the worst suffering if possible, would be better, than being offered potentially dangerous treatments or simply being dismissed as too ill to help and given nothing or less ill or given wrong advice and pushed to do more than is safe.

Invisibility

The house and bed-bound become invis- ible. The most severely ill, left chroni- cally neglected, are at constant risk of harm or deterioration or misinterpreta- tion and psychiatric abuse, even sectioning. Those who are not so severely ill, but perhaps more so than those who can easily attend clinics, remain semi-visi- ble and are likely to be described by clinicians who do not see the worst suf- fering as having Severe ME, when this is not necessarily the case. The most severe experiences are not necessarily seen nor fully compre- hended, people who push themselves to see consultants, then deteriorate signifi- cantly afterwards as a consequence, once home again may also not be seen in their worst or post-exertional state. If people can only be seen when at their apparent best, the true nature of the disease and symptoms and their experi- ence will be invisible. Furthermore, if tests can only be done in moments of potential tolerance, the outcomes may be very different. The issue may be eas- ily missed if measurements fluctuate depending on the presence of symp- toms, such as Periodic Paralysis. The real illness disappears from view and those with it are endangered by a sys- tem that does not recognise them, does not know how to help them and is likely to judge or blame patients rather than own their own culpability and responsibil- ity. Or worse still, say their is no cause for their symptoms. Patients meanwhile are expected to jump through endless hoops in order to obtain vital benefits and care, reassess- ments that are impossible to bear and endless proofs that are difficult to pro- vide, are demanded, yet at the same time, under psychiatric influence, the necessary tests are proscribed by NICE. This must change in the new guidance. Psychiatry misrepresents ME as “medi- cally unexplained”, when in fact it is medically ignored”, misinforming doc- tors and health professionals. Despite writing to the government, the Health Service, NICE and the Royal Colleges and several charities involved in the JCMPH, we could find no willingness to change the misinformation and no one willing to deal with the error to ensure Commissioners were made aware of it.  The clinical input required is unavail- able unless you have the money to pay privately and even then it may be unre- liable or unsafe. Everyone is different and needs an individual approach. Any- one could have a missed alternative or comorbid diagnosis under the current regime. Regulated biomedical training should be standardised and provided, but only if it is correct and free from psychiatric misinterpretation. The real question is who will do it and ensure it is correct? Down the years we have witnessed and experienced being harmed by ignorant practitioners, being misinterpreted, being downplayed by ignorant neurolo- gists, being lied about and misreported , left without thorough investigations or coherent explanations as a consequence. My wife says, “The worst betrayal was by people who insisted they could help, then harmed horrendously instead and left me so damaged that I was literally tortured by normality, was completely cut off from everyone and everything and harmed by every sound and interaction, made a million times worse than my very severe level of illness to start with, which made life intolerable for us both and left us with no hope, traumatised and judged wrongly. I still have not recovered many years on, even to my previous level. Trust is a fragile thing. The trust of those with ME needs completely re- building. Psychiatric involvement and influence has to be acknowledged as inappropriate and not wanted. A strong message by NICE must be given on this point and followed through, for the new guidelines to be effective and of help. We have all been massively let down so far; the new NICE guidelines must begin to restore trust and faith in the medical profession and the health service in its dealings with ME specifically. There  must be a biomedical focus and acknowledgement of the true nature of the disease.

The dangers of a fatigue-based

biomedical service

Mistreatment and harm can also come from a biomedical approach too, not just a psychiatrically biased one. This needs acknowledging. The physiological issues must be addressed much better than they presently are and the impor- tance of acknowledging not knowing what to do is also essential, if it is the case. But there must be better testing, investigation and explanation, in order to understand the underlying physiol- ogy of individuals and offer realistic support, not pressure to improve , that is unrealistic and unlikely. Interventions must be medically appro- priate and based on understanding the physical illness and the dangers to the body and practicality of physically cop- ing, posed by physical deterioration. It is not acceptable to limit the recognition of symp- toms, to focus on a vague symptom of fatigue and to continue to not acknowl- edge the true disease and separate it from chronic fa- tigue once and for all. Neither is it acceptable to promote the idea that pain, sleep and rest are easily controllable. It simply has never been our experience. Because the reality of Very Severe ME is seen in fewer people than the mild and moderate categories, this should not mean that this reality is simply ignored and not adequately ac- knowledged , represented or endan- gered. Anyone can deteriorate to this level. That is the truly frightening issue that seems to be downplayed or ig- nored. Not everyone recovers from a deterioration. Deteriorations can be horrendously, in- describably tormenting and so much worse than could be imagined. The guidance for the most ill must be about meeting individual need, recognising the person’s vulnerability, fragility and the potential danger of any interven- tion. Knowing how to care, in this context, becomes extremely important, in order to try and avoid further deteri- oration of health.  Pacing, for example, should not be universally demanded  because the most ill are too ill to even do this. To insist on Pacing across the board is to harm those barely hanging onto life, the most Severely Affected, for whom pacing is difficult to impossible. An honest Risk Assessment for any in- tervention is essential, even physical contact or dialogue can cause deteriora- tion in the most ill and must be included  as an integral component of the new NICE Guideline. Much better protection must be in place for all levels of illness to ensure that de- terioration is not triggered inadver- tently by ignorant health providers, even if they mean well. Meaning well is not enough. Good, safe practice and treatment pathways are essential. The true nature of the disease must be acknowledged this time and language must not be open to misinterpretation to allow the continued misunderstand- ing and mistreatment or neglect of this severely disabling disease. A commit- ment to a biomedical pathway must be made. Any other attitude must surely be quashed and noted as unacceptable. A recognition of the inappropriate influ- ence and misrepresentation by the psychosocial pathway must be made. ME is not like any other illness, in that anything at any time can make the per- son worse and untold long term harm can be done from seemingly tiny, even insignificant interventions, let alone bigger interactions and treatment op- tions, if the person is ever pushed beyond their ability or tolerance or in- appropriately treated, with dire long term consequences. What is required, univer- sally, is the truth of the illness, which so far has been missing. A biomedical home bound visiting path- way must be created for the most ill, including the possibility of consultant input at home. But that must not be ac- cepted as a way to interfere and then potentially harm the most vulnerable, should a psychosocial path not be aban- doned. It would be extremely danger- ous for the most vulnerable to be treated as mentally ill or in need of psy- chiatric home provided therapies; that would be a completely  unacceptable outcome. There needs to be a driving commit- ment to recognise and specifically identify the most serious and severe symptoms, such as paralysis and muscle spasms alongside the myriad  severe environmental hypersensitivities that people with ME experience, with guid- ance on how to genuinely help with these tormenting and isolating symp- toms. How to help people access health care whilst homebound simply must be addressed. A new approach is re- quired not just because it seems like it would be a good idea, but because it is essential. It needs  recognising  that people can die from wrong intervention. This needs to be seriously raised as an issue. No more pretence that ME does not kill. More than this, ongoing clinical support should be offered over years, as long as needed and appropriate aids provided easily to those in need. New things need considering and creating even, to take into account the specific needs imposed upon the person extremely weak, frail and hypersensitive. Even with excellent GP support- which is not a given for this disease- there is such a climate of negation and psychi- atric influence in the UK, that there is no way of knowing whether a GP or a referral is safe for a patient.  There is no way of knowing whether the doctor or consultant is aware enough and correctly medically trained about ME to be open minded enough to listen to the patient and run serious tests, rather than simply dismiss the person as having a mental health prob- lem due to psychiatric influence and/or training input or whether co-morbid conditions will be ignored, overlooked or not recognised. There needs to be a safe nursing proto- col in place and safe guidance, based upon a partnership model.  A Moment Approach to care is essential, to max- imise the opportunity to meet need as safely as possible with such a complex disease. NICE guidance needs to  acknowledge that for some people the hospital envi- ronment is too dangerous to engage with, but that there still needs to be medical input and an appropriate lo- calised home bound service provided throughout the country. People need sensitive aware care, not wrong judg- ment, risk of sectioning or mismanage- ment due to lack of comprehension of how seriously ill they are. Being too ill to even attend a hospital or be in any environment that could dan- gerously comprise very fragile health or undergo most tests is a vulnerable and difficult place to be. Even taking a blood test may be agony and extremely diffi- cult to get a sample. The after affect devastating. Unless NICE changes it approach to en- compass the needs of all, we fear it may be  too late for some people;   those who cannot access testing or consultants in hospital settings, those  open to misin- terpretation that they are refusing help, because the system does not understand or recognise the illness, Myalgic Encephalomyelitis.

 In Summary

What is actually required, but is not provided, due to complete lack of recog- nition of ME as a real ongoing physical illness as opposed to a fatigue condition, due to deconditioning and wrong thought, is: A biomedical pathway and service that provides accurate diagnosis, honest prognosis, appropriate in depth investigations and testing and interpretation, full symptom recognition with ongoing appropri- ate clinical support, and possible individual symptom treatment, not psychiatric management tech- niques which deny the true disease and risk worsening symptoms or deteriorating patients health. A nationally provided biomedical service that offers input to the home bound and  bed bound and those who would deteriorate sig- nificantly attempting to attend outpatient clinics ....in situ, rather than the nothing, which is cur- rently provided for the most severely ill. A biomedical consultant and GP home visiting service to help the most ill.  Appropriate hospital environment for those able to attend, yet at risk of deterioration from the effort and impact. Flexibility and home testing where possible is required. New aids and equipment, specially designed, for people with ME. Understanding, acceptance, help and ongoing support, safe guid- ance, risk assessment, proper investigation and special, relevant aids to be provided, along with clinical explanation, for the acute hypersensitivities to the environ- ment which patients experience. An understanding by medical staff of the need to understand the dan- ger posed by wearing perfumed products and the need to respect a fragrance free environments for many people with ME. Home visits or appointments, flexi- bly timed to when the person may best tolerate them. A commitment to train doctors and consultants appropriately in a bio- medical interpretation and understanding of the illness. A commitment to use the correct name only for the correct disease and illness manifestation; Myalgic Encephalomyelitis. A determination to better investi- gate, recognise, treat and support all symptoms. Tight clinical criteria. A fundamental change in attitude. An acknowledgment that meaning well is not the same as doing well. None of this is currently available. In this way psychiatry has influenced and enabled the burying of a serious physi- cal disease with severe if not fatal consequences, as a vague fatigue condition, with no possibility of right- ing this wrong in the sys- tem. Its sway must be recognised and totally re- moved from ME, for there to be any hope of a safe way forward. © Stonebird 2018 Greg & Linda Crowhurst
“The abandonment of the name Chronic Fatigue Syndrome along with all the vague and variable criteria used to de- scribe and suppos- edly diagnose it must happen.”
A Moment Approach  to care is essential,   to meet need as  safely as possible .