User:Act Now

OPEN E-MAIL

                                                                                                                                                 to

                                                                                   BORIS JOHNSON, JEREMY CORBYN, all Party Leaders, all Parliamentary Candidates

Dear All    

There are estimated to be around a million people in the UK who are directly or indirectly affected by ME. Maybe you have been affected by ME too.

''Who should they vote for? Should they vote for you?''

They have been on the receiving end of

-  one of the biggest medical scandals of the 21st century exported around the world where there are an estimated 30 million ME sufferers

-  entrenchment of austerity healthcare following the world banking crash

-  gross betrayal of the NHS

-  gross betrayal of human rights

-  complete lack of action in almost a decade since the PACE Trial by three Health Secretaries and three Prime Ministers, including by the current Prime Minister and Health Secretary.

It is estimated that around a quarter of a million people in the UK suffer this devastating, incurable illness. The illness can put an intolerable burden onto the families and loved ones of the ME sufferer. Careers may have to be abandoned, homes sold, pensions cashed in, families can be broken in two.  'I lost my life, health, husband, my career and my home”, Ann McGregor. The personal financial loss can run into millions of pounds, that it is if you are one of the lucky ones who has access to such sums. If you don't there is little hope. The emotional, physical and mental burden can be completely overwhelming. The health of around a quarter of ME sufferers has degraded so badly they have severe ME. This can happen to anyone with ME. Those with severe ME can find any light or the slightest sound so painful  it is intolerable. They can be too weak to chew or even swallow. They can find it impossible to hold down food, or liquid, violently throwing up every morsel or drop. They can be in so much pain they cannot be touched. They can be totally bedbound, too weak to move. ME sufferers can pass the threshold for assisted dying where countries permit it. The living dead. The disease burden is considered to be the greatest of any illness. The vacuum of well funded biomedical research is grotesque, and cruel.  'the UK has not funded any biomedical research since 2012,' Dr Philippa Whitford MP. In such circumstances suicide can look like an attractive solution. There are worse outcomes than that for ME sufferers at the hands of our national healthcare system.

What's in a name?

The House of Commons used the term ME earlier this year, a debate brought to parliament by four brave MPs. They chose not to comply with our healthcare system by using the term CFS. ME is short for Myalgic Encephalomyelitis. Myalgic refers to muscle pain, indeed the defining symptom of ME is malaise after exercise. Recent biomedical research by the British Professor Julia Newton, confirmed remarkable defects of muscle function in ME sufferers. Other biomedical research has confirmed that ME sufferers fail to improve their oxygen consumption with exercise, as healthy people do. No fuel, no energy. Encephalo refers to the brain, myel to the spinal cord and itis to inflammation. Autopsies of ME sufferers show inflammation of the basal ganglia. The ganglia are the gateway to our sensations. Heightened sensitivity to stimuli, such as noise, light, sound, smell, touch etc are associated with Inflammed ganglia. I know of no test to identify such inflammation on the living, and there are few autopsies which check this in ME sufferers who have passed away. The term ME is an honest attempt at an accurate, precise description of the illness. The term CFS, Chronic Fatigue Syndrome, the term used in our healthcare system, is broad, imprecise, so broad in fact that it can readily include various other conditions, including, most significantly, psychological ones. Indeed, the term CFS was coined by those who believe that ME is a psychological illness. The fact that there is a greater incidence in women, as much as 2 female to 1 male, appears to have had some influence on this theory. The term hysteria is sometimes used. History confirms that there is a long and inglorious history of psychologists and psychiatrists enthusiastically asserting physical illness is psychological. For example Multpile Sclerosis was described as ‘hysterical paralysis’, the tremor of Parkinsons's Disease was described as being caused by excessive masturbation, AIDS was caused by ‘the stress of being gay',  Cancer was caused by ‘the suppression of bad thoughts’. History is a cautionary tale of the critical importance of maintaining biomedical research even into illnesses which leading experts of the day describe as psychological. The  lack of precision in the term CFS allows, some say it was designed to allow, ME to be be slipped  into a group of illnesses, psychological illnesses, caused by social predicament. The term CFS, and the psychological theory which underpins it, was enthusiastically embraced by some British psychiatrists and psychologists, who have worked tirelessly over a number of decades to embed it in the British healthcare system, and indeed across the world. This group, sometimes colloquially known as the Wessely School, made up a criteria to define the mixed bucket of illness described by CFS. They chose to use the same lack of  precision that had worked with the term CFS. They chose to call the criteria the Oxford Criteria suggesting it was authoritative, precise and of high quality. It is shocking then to discover that the Oxford criteria are the vaguest, least scientifically credible of the 20 criteria used around the world to describe ME. A diagnosis of CFS under the Oxford criteria requires the presence of variable unexplained fatigue. The malaise that ME sufferers experience is not fully understood, but there is substantial and compelling enough evidence for WHO to see it as enough to designate ME as a neurological illness. Yet it could be argued that as this fatigue is not fully explained, it is unexplained, so allowing it to fall into the loose CFS umbrella term. The greatest flaw in the Oxford Criteria, of profound importance, is that it fails to include the defining symptom of ME - malaise after exercise. There is considerable evidence that exercise and talking to those you have reason to trust is often helpful when we are in emotional and mental distress ie suffering from one of the psychological illnesses covered by the term CFS. Putting an illness defined by malaise after exercise, into a group of illnesses where exercise can be helpful, is something like putting diesel into a petrol car. It is a recipe for a complete breakdown, a disaster. It is a scientific and ethical outrage. The American National Institutes of Health, the NIH, as long ago as 2014, stated  'the Oxford case definition results in a high risk of including patients who may have an alternate fatiguing illness '. So concerned was the NIH that it requested the withdrawal of the use of the Oxford Criteria in order to avoid harm to ME sufferers  https://prevention.nih.gov/sites/default/files/documents/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf. Yet it adamantly persists in the UK healthcare system. In a review of ME fresh off the press in October 2019, the influential Cochrane Group consulted a majority of research using the Oxford Criteria. Equally disturbing was that it was the Cochrane Group's, Common Mental Disorders team which undertook the review. The acceptance of the term CFS and the Oxford Criteria have allowed the metamorphosis of a physical illness into a psychological illness throughout the UK healthcare system, and worse, around the world. It has deprived those with real mental illnesses of considerable valuable resources.

''What horrors were predicted for ME sufferers in the NHS? ''

Earl Howe prophetically stated his concerns about such a metamorphosis in early 2004, because  'of the very considerable influence exercised over government policymaking by those who believe that ME is an inherently mental illness.....If in the UK not enough emphasis is being placed on the WHO definition, it is likely that research on ME, which everyone agrees is vitally necessary, may be wrongly balanced. { '£2.62 million had been spent on ME research since 2011.....this money was spent on behavioural studies.'  Carol Monaghan MP Feb 2019 } ''I should be interested to hear from the Minister how much research is being directed to the possible neurological and physical causes of ME as opposed to other possible causes.  {the UK has not funded any biomedical research since 2012.....Dr Philippa Whitford MP Feb 2019}....I am concerned, too, that if the definition of ME as a mental disability gains further ground, there will be profound implications in the context of the reform of the Mental Health Act. The Government's original proposals included a power to enable doctors to impose compulsory treatment orders on adults and children. I have considerable difficulty with the concept of compulsory treatment orders in any case, without the thought that they might capture those who should not be classified as being mentally ill in the first place.'' {http://www.sophiaandme.org.uk/ } {In the past one felt that once a young person reached 18 they were safe from these pressures but now the same sort of belief system is leading to an adult form of Care Proceedings. Using the Mental Capacity Act, the patient who declines ‘treatment’ (typically, admission to a psychiatric unit) is said to lack ‘capacity’ to make their own decisions.https://www.tymestrust.org/pdfs/vision2011-1insert.pdf }

''.....I have read numerous accounts of patients who have presented to their doctor with the debilitating and distressing physical symptoms that are ascribed to ME, and who have been told, in essence, that the symptoms are psychosomatic and that they should stop making a fuss and go home. I have a particular concern for children with ME. A child presents with symptoms consistent with ME and is classified not as having an illness with an organic cause, but as being mentally disturbed. So the question is asked: what is making him mentally disturbed? All too often, the answer is that it is the parents; that is, that a parent is in some way inducing the symptoms in the child. {One in five families caring for a child with ME have been referred for child protection proceedings.} If a parent is inducing them, the cause is clear. What is behind it is Munchausen syndrome by proxy—that ill-founded diagnosis which is so flimsy yet so powerful and which, as recent criminal cases have shown, has been instrumental in bringing about desperate travesties of justice for mothers and families. So instead of asking how the child should be treated, the question becomes: is the child safe to be left with the parent? Should care proceedings be considered?'' {in 2014 the Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault. 100% of these families .... innocent, https://www.tymestrust.org/pdfs/falseallegations.pdf } That is a train of thought that in general practice and social services is far from uncommon; and all because children who are genuinely physically ill are classified as though they are not. https://publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-13.htm

The promise of the perfect austerity package

The Wessely School were seen as pioneering. They had accumulated considerable expertise and a high reputation in mental illness and were well represented in the decision making bodies of our healthcare system, and at WHO. Their interactions with WHO have been revealing. Earl Howe in early 2004 comments, '' 'The WHO guide to primary care is one of the key sources of guidance for English-speaking doctors in general practice. That is why it was with surprise that patient groups noted a couple of years ago that the guide and its associated web guide appeared to take a stance completely opposite to the official WHO line, classifying ME under the heading of "Mental and Behavioural Disorders". The diagnostic criteria for ME as listed in the guide were totally inconsistent with the internationally accepted criteria, omitting to mention numerous biological abnormalities and placing undue emphasis on lifestyle factors. How were such inconsistencies to be explained? It turned out that that part of the WHO guide had been compiled by the Institute of Psychiatry at King's College Hospital, London, and the Department of Psychiatry at Oxford University, where a number of the proponents of the "psychiatric abnormality" school of ME are based. In September 2001, the WHO issued a statement effectively repudiating the classification of ME in the WHO guide and on the website.' ''    https://publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-13.htm This was happening under a New Labour government keen on reducing welfare dependency, and giving people some relief. The "psychiatric abnormality" or psychologisation of ME promised a win-win to a New Labour government. The Wessely School undertook considerable research using the Oxford Criteria and the term CFS. Elizabeth, an ME sufferer on a trial using these criteria recalls   'they {the other participants in the research} j''ust didn’t have the same symptoms or experiences as me, most notably the post exertional malaise (PEM). The predominant criteria for getting into this trial was fatigue of longer than 6 months – I feel because of this that there were several different conditions represented in the trial, not just ME sufferers.....' '' Mixing people who have a physical illness with those who have a mental illness is fraught with risk, as the NIH warned. Elizabeth goes on to say,  'The treatments (CBT/GET) that I did as part of the trial had a hugely negative impact.'  She continues,  'the results showed only positive outcomes for the data and nobody made worse by the treatments'  She was told that  'By using varying mathematical interpretations....people like me, who were made worse, were excluded.'  In other words, ME sufferers like her, simply vanished from the data. She was very concerned and pointed out that,  'When new drugs are going through testing, all side effects have to be declared...the way the trial was designed, it could only have limited scientific value, and was going to be of no use for finding a treatment for ME.' Deeply flawed illness descriptor CFS, deeply flawed illness criteria, Oxford Criteria, equals deeply flawed research. It is from such deeply flawed research that members of the Wessely School have made, and continue to make, claims of expertise in ME. They convinced the National Institute for Clinical Guidance (NICE) to adopt the term CFS for ME, and then as 'experts' in the illness, in 2007 they succeeded in getting NICE to adopt their recommendations for treatment, talking therapy and exercise. The Wessely School is also influential at the Medical Research Council (MRC). NICE wanted further validation of the treatments the Wessely School had managed to get it to adopt. The government, in the form of the Deparment for Work and Pensions (DWP), was also interested. Lots of money to be saved. ME sufferers were expensive and they were keen to reduce welfare payments. The icing on the cake was that followers of the Wessely School argued against awarding welfare payments to people suffering ME. Their financial appeal went further as they argued against biomedical research, against giving ME sufferers any tests. They argued against social care. The evidence of the scale of suffering their recommendations have caused is largely hidden. The mortality rate for ME is obscured by using the broad Oxford Criteria definition of CFS. When a more precise definition is used, with the defining characteristic of malaise after exercise, research indicates that ME sufferers die over 17 years younger than the average. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5218818/ Many of those years of survival will have been in the most awful and harrowing circumstances. Given that ME is estimated to cost the UK economy £3.3 billion annually, seventeen years represents a massive saving. https://mrc.ukri.org/news/browse/two-effective-treatments-for-cfsme-are-also-cost-effective/ There have been three Prime Ministers including the current Prime Minister since the PACE Trial. There have been three Health Secretaries. All of them have allowed this to happen on their watch. None of them have attended ME debates in Parliament, yet this is the most outrageous austerity healthcare imaginable, a gross betrayal of the NHS and everything it stands for.

The link between austerity, the global crash and the current government.

Austerity was imposed in 2010 by the incoming government in the wake of the global banking crisis of 2008. Austerity is linked to those with the least in the UK, being put under considerable extra stress. There has been a proliferation of food banks, a massive increase in the homeless, increased child poverty and so on. The disabled, some of whom are ME sufferers, have suffered some of the harshest reductions in what little they have to live off. There have been many suicides. It is a tale of grinding suffering, real hardship. This austerity was primarily a response to the global financial crisis, a crisis attributed to a housing credit bubble. Banks such as Deutsche Bank were at the heart of this bubble at a time of weak self regulation. The consequences were a credit crunch, recession, and austerity in the UK. Deutsche Bank played a significant role in this financial crash according to a report titled 'Investigations into Wall Street and the Financial Crisis' by the US Senate Permanent Select Committee. This is significant. There is a direct link between austerity in the UK, the financial crash and the current government. A Managing Director of Deutsche Bank between 2004 and 2009, was our current Chancellor. ME sufferers have suffered appallingly as austerity healthcare has been embedded into our healthcare system following the global crisis. How can ME sufferers trust their future with someone associated with that global financial crisis and the living death it has condemned them to?

The PACE Trial

Millions of pounds of public money were spent to fund the trial known as the PACE Trial, which was published in February 2011. The Trial was the baby of the Wessely School. It used the umbrella term CFS  and the flawed Oxford Criteria. It is unknown how many people in the Trial, if any, actually had ME, as opposed to CFS. During the Trial  'the investigators simply changed the success criteria.'  commented Carol Monaghan MP who, as a science teacher, trained prospective scientists in research methodology. She explained, '' 'there are a number of stages to any scientific investigation: Start with a hypothesis. Decide how you will test this theory, what measurements you will make, how you will record your results and how you will use these results to draw your conclusions. Those conclusions, which might be different from the original hypothesis, must be based on the evidence you have gathered. That did not happen in the PACE trial, which relied on patient self-reporting, rather than measurable physiological parameters. Furthermore, when the results were not as expected, rather than revise the original hypothesis, the investigators simply changed the success criteria.'  She continued,  'patients participating ......who had deteriorated during the study were considered recovered.' '' https://hansard.parliament.uk/commons/2018-02-20/debates/990746C7-9010-4566-940D-249F5026FF73/PACETrialPeopleWithME  In other words people who got worse were counted as being better. This is not science. What does the Trial say about the quality of British medical science? More damage is done by the various administrative bodies in our healthcare system which continue to defend and promote the use of the PACE Trial. https://www.parliament.uk/documents/commons-committees/science-technology/Correspondence/190129-Sir-Jonathan-Montgomery-Health-Research-Authority-to-Chair-re-PACE-trial.pdf   'I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.' Carol Monaghan MP. None of the Prime Ministers since the PACE Trial, including the current Pime Minister, have acted. This collective failure means that the PACE Trial continues to be by far the most influential CFS, and by absorption ME, research to date across the world  where there are estimated to be around 30 million ME sufferers. If you include those indirectly affected you are looking at a total of around 100 million people. The PACE Trial continues to have the stamp of approval given to it by the British medical establishment, and by the British government. The consequences for those concerned are catastrophic. This is a humanitarian crisis, a humanitarian emergency. In such circumstances it is beyond belief that the current Health Secretary could not find the time to attend the Parliamentary debate earlier this year.

The roll out of much more austerity healthcare

ME, subsumed into a group of psychological illnesses under the term CFS, can also be included in a wider group referred to as illnesses with Medically Unexplained Symptoms (MUS). MUS can account for almost half of GP appointments across the UK, and half of all new visits to hospital clinics according to the NHS. In other words there are millions of people directly affected, and likely 10's of millions indirectly affected in the UK. Maybe you are one of them. The Wessely School approaches MUS the same way it approaches ME. The presumption, scientifically unsound, is made that a lack of evidence that an illness is physical, is evidence that the condition is psychological. The Wessely School claim they are illnesses created by the existence of the welfare state. The same tactics used on ME are replicated, stifle and minimise biomedical research, stigmatise those who dissent, minimise testing, minimise cost, the same austerity healthcare. The Science Media Centre is all too willing to provide as experts, supporters of the Wessely School view. Such an approach is astonishing in an era where novel chemicals and pollution are ubiquitous, the unintended effects of most of them completely unknown, but science tells us that there will be effects. These chemicals, some of which are known toxins, are in our food, in our water, in every breath of air we take, perhaps transported by or embodied in, micro and nanoplastics. Developmental defects, autism, heart palpitations, muscle tremors, cancer and memory loss to name a few have been linked to them. Toxic air has been linked to dementia, cancer, kidney disease, hypertension amongst others. Psychologising a physical illness causes immense additional harm to the sufferer and takes away valuable resurces from those suffering real mental illnesses. The tactics of austerity healthcare, suppressing biomedical research, actively preventing increased knowledge, blaming the individual or their loved ones by claiming that all illness which we do not fully understand is psychological, is scientifically unsound.

Government honours the responsible

The psychologisation of ME, as Earl Howe predicted in 2004, has led to countless ME sufferers being declared to lack mental capacity. Their experience of the illness conflicts with the Wessely School so they lack mental capacity. Once in a mental institution, totally unsuitable for them, they can effectively disappear from the ME record as they can be rediagnosed with various Somataform Illnesses. Flawed science. Government has seen this psychologisation model as so succesful that it knighted the lead figure in 2013. Indeed the government held the lead figure in such high regard that they were made chair of the Independent Review of the Mental Health Act 2018. The review was charged with investigating concerns over rising rates of detention under the Act, amongst other things. The person who carries a huge responsibility, one way or another, for a reign of terror over some of the frailest people that exist, a reign of terror which continues to this day, was made the chief investigator.

The failure to listen to ME sufferers

'' 'I was on the Health Committee for 10 years and remember the arguments—we should now take this opportunity to start listening to patients. The controversy of the PACE trial arose from a failure to listen to sufferers and to believe their experiences. '  '' Sir David Amess MP. Survey after survey of ME sufferers have confirmed the harm resulting from the recommendations deeply embedded in our healthcare system by the PACE Trial. Data collected over a period of 14 years indicates that almost 20% of ME sufferers get worse with talking therapy, CBT, and incredibly almost 50% get worse with the other recommendation, exercise, or GET. https://www.meaction.net/wp-content/uploads/2019//MEAction_UK_Parliament_Briefing_Full_Jan19.pdf  This immensely powerful Wessely School dismiss such evidence. They use the Science Media Centre to provide as experts, supporters of the Wessely School view. They dismiss the views of other doctors, clinicians, nurses who are appalled at the suffering they are witnessing as a result of CBT and GET. They dismiss those who are appalled at the lack of biomedical research, the lack of welfare, the lack of social care. They dismiss the cruelty, persecution, victimisation. The Wessely School dismiss over 5000 pieces of research which indicate ME is a physical illness. They dismiss the view of WHO. They have tried instead to falsley suggest that WHO designates ME as a mental illness. The first edition of the “Guide to Mental Health in Primary Care” issued by the Insitute of Psychiatry, the Guide, available to all GPs in the UK, designating ME subsumed into CFS, as a mental illness, bore the WHO logo. The matter was discussed in the House of Lords on 22 January 2004, namely whether Professor Wessely had used the WHO logo to give credence to his own view of ME as a mental illness. https://me-pedia.org/wiki/Simon_Wessely#World_Health_Organization_classification/wiki/Simon_Wessely#World_Health_Organization_classification

The international call to withdraw the PACE Trial

About a year ago the PACE Trial data became available, following years of struggle to obtain them. Eminent scientists from around the world, including a Nobel prize winner, have expressed their profound concern at the quality of science they reveal. Inconsistent use of diagnostic criteria, inadequately defined research cohorts, inconsistent findings, undeclared conflicts of interest, outcome switching, extraordinary claims of what is deemed recovery have all been referred to. Indeed so poor is the science of the PACE Trial, so flawed, that they have   demanded that the Trial be withdrawn immediately. This demand is entirely consistent with  the NIH's request for the withdrawal of the Oxford Criteria, used in the PACE Trial, in order to avoid harm to ME sufferers.

There has been so much concern about the conclusions of the PACE Trial that there was a debate in the Houses of Parliament on 24th January 2019. The House concluded that the treatments recommended in the PACE Trial should be suspended. The government have not acted. Following the concerns expressed in this debate, the Health Research Authority (HRA) wrote a letter to the Science and Technology Committee. (https://www.parliament.uk/documents/commons-committees/science-technology/Correspondence/190129-Sir-Jonathan-Montgomery-Health-Research-Authority-to-Chair-re-PACE-trial.pdf) The HRA confirms that the group of psychiatrists and psychologists had managed to direct NICE, one of the most respected and important healthcare decision making bodies in the UK, to recommend treatments on what was recognised as a weak evidence base. The letter confirms that the MRC's purpose in funding the PACE Trial was to improve the status of the weak evidence. The HRA does not comment on the fact that the peer review of the PACE Trial, undertaken by the Cochrane Collaboration, included the four PACE Trial lead investigators. This is rather like marking your own exams. It is anything but robust. The HRA simply bows to the reputation of these various august bodies, as opposed to the detailed concerns about their actions on this occasion. This is not robust independence, it is complacent acceptance of the status quo. The HRA fails to address  the fundamental scientific flaws on which the PACE Trial is based, the umbrella term CFS, as defined by the seriously flawed Oxford Criteria. The HRA fails to acknowledge that the general and consistent experience of ME sufferers, those who critically suffer malaise after exercise, when they undergo the recommendations of the PACE Trial, is that they fail to deliver. Indeed they can make things worse, much worse. https://www.meaction.net/wp-content/uploads/2019//MEAction_UK_Parliament_Briefing_Full_Jan19.pdf  In practice the PACE Trial fails, catastrophically on occasion, to deliver what it promises. You wouldn't build a space rocket with that science would you, yet the HRA shrugs its shoulders. Comments made about the handling of the Hillsborough disaster come to mind “the patronising disposition of unaccountable power. The Hillsborough families know that there are others who have found that when in all innocence and with a good conscience they have asked questions of those in authority on behalf of those they love, the institution has closed ranks...'

What's GET like in real life, for ME sufferers?

There is plenty of evidence that exercise is good for us. But imagine you are suffering from an illness whose defining symptom is malaise after exercise, absolutely devastating malaise for those with severe ME. This is ME. You know there is a significant body of  quality biomedical scientific research which verifies this. For example, a recent 20 year meta-analysis by the Workwell Foundation found evidence of chronotropic incompetence in ME sufferers. (Chronotropic incompetence (CI), broadly defined as the inability of the heart to increase its rate commensurate with increased activity or demand, is common in patients with cardiovascular disease, produces exercise intolerance which impairs quality-of-life, and is an independent predictor of major adverse cardiovascular events and overall mortality. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065291/) Imagine someone recommending  you exercised. Would you believe them, it is after all the NHS, or do you trust your own experience? Would you give it a try? You want to keep the doctors on your side. Imagine you are young, the pressure to do GET is intolerable - those you love the most, your mum and dad, being accused of abusing you. The last thing you want to do is hurt them. You can be taken away from them, your life support system. It breaks your heart. Or maybe you are an adult with severe ME. You need welfare to keep you alive, and there's so much pressure for you to do GET, pressure on you and your loved ones.

'' 'I was forced into a wheelchair and taken to a psych ward. I couldn’t sit up, and it took several people to hold me as they refused to transport me by any other means....my family were kicked out. I was alone in that ward, barely conscious but still aware of what was happening....my headphones and eye mask were removed and the nurse threatened to take away the blanket I was using to cover my eyes. I was relying on mouthing to communicate and trying to explain. At one point the nurse became fed up and informed me she wasn’t going to “put up with my shit”....if I didn’t cooperate and that I was just “making it harder for myself”....I was taken on a chair and force showered, unable to move...I remember focusing on trying to breathe and just cope, somehow try to endure what was happening. After that I was dragged into a chair.........'''

You do it. You do GET. You tell them that exercise makes you worse. You tell them that GET is making you worse. They say it can't be. It's all in your mind, and that is evidence that you lack Mental Capacity. Staff, doctors even ME specialists, see how your suffering, but they block it out because they believe its all in your mind. They believe what they're doing is in your best interests. Some show empathy and kindness to you. They are appalled by your suffering, but they feel they must be wrong, because the others see them as weak, professionally compromised. They feel compelled to obey. Your family, your friends, distraught by what's happening are treated with distaste. They are seen as part of the problem. They are keeping you ill, because they believe you, they help you, they keep you alive. Is this really happening? Your loved ones are taken to the Courts for loving you. You are told you are the victim, your loved ones have been abusing you. They are keeping you ill, they are letting you die, they are psychopaths. This can't be happening. This is the NHS. It's the 21st century. Your loved ones are forced to go to the Family Court. They are desperate to protect you. When you are older they are forced to go to the Court of Protection. A secret trial. The allegations against your loved ones are so horrible that you can't allow it to be public. Your loved ones are guilty, the NHS doctor said so. It feels like the Court of the Inquisition. Distorted, grotesque accusations are made. Your loved ones are guilty because they have given you selfless love. They are guilty by association. It's like a rerun of the Salem Witch Trials. Who will believe your loved ones? They will do everything to help you. They raid their savings, their pension, they take a loan out on their house, they will have to sell it, to pay the endless legal bills. That is if they are lucky enough to have any of these things. And if they can't protect you who will? NICE Guidance will help. It will give you some protection. They act as if you don't have ME. They act as if ME doesn't exist. They ignore ME experts. They say they are dangerous.They don't look at NICE's ME Guidance. The safeguards built into it are lost. You lack Mental Capacity, they claim. They've taken your family support away. You are alone, totally alone. Absolutely terrified. Light is like needles in your eyes, but they make you take your eye mask off. Sound makes your head hurt so much, but they make you take your ear protectors off. They force you into a chair. They call this GET. You can't sit upright, your body is like a rag doll. You are in so much pain. You cry with pain. You cry in desperation. Someone must listen. This is the NHS. They tell you your tears are tears of anger, not pain. You know that if you cry it will be worse for you, and you have so little energy to cry. Is this what torture is, you ask yourself. You trust the NHS, but they are torturing you. They just leave you. Your pain counts for nothing. You have no voice. They tell you that you vomit because you have an Eating Disorder. ME doesn't exist. They put you in a mental institution for an illness you don't have. You have been falsely imprisoned. You are in the total control of a doctor who has no understanding of ME. Little things can kill you but they don't understand. Your body feels like a coffin. You know your death will go down as an Eating Disorder, or some other mental illess. No one will know that you died of ME, except your loved ones. Who will believe them? Precious few deaths from ME are on the record. Merryn Crofts died of ME in 2018. She couldn't eat. She weighed little more than 5 stone. Her nerve roots were inflammed, her bowel hypersensitive to food.

What about CBT, in real life?

You know talking about our problems can be very helpful, especially when we are helped to deal with them positively. You know that CBT, or Cognitive Behavioural Therapy, is helpful for those suffering a number of chronic illnesses. You want your life back. You want a career. You don't want to be a burden on your loved ones any more. You want hope, you want a life, the best it can be. You want a way out of feeling dismissed by doctors, treated with disgust and contempt because you are wasting their precious time, being made to feel that you are a worthless scrounger for taking any money off the welfare system. Government institutions can be so hostile to you. You want a way out of this hopelessness, this helplessness, this devastating, hateful living death. CBT is like a bright light, a magic formula. Believe, and you will be saved. It's so simple. Don't believe your body when it tells you that light is like needles in your eyes, don't believe your body when it tells you sound is like hell, or that someone touching you makes you feel excruciating pain. Don't believe your body when you do some exercise, and your whole world implodes. You know from your own experience that not respecting the way your body feels just makes things worse, horribly, painfully, excruciatingly worse. But how can you not try? An NHS doctor is telling you it will make you better, and you trust the NHS. They tell you to take your eye mask off, and your eyes hurt. They tell you that they don't really hurt. Your response is oversensitive because you are frightened. It's the fear that's talking. You listen to them, but your eyes keep hurting, and you find other things get worse as well, the pain, your aching head. You feel you are letting them down. You aren't trying hard enough. What's wrong with you? Why can't you do it? You try harder, you take your eye mask off again, but your eyes get worse again. It hurts so much. You have to tell them. They push you harder and harder. Everything is getting worse. You question yourself. Why are you so weak? Why can't you do what they want? You blame yourself because it isn't working. It must be your fault. You are so worthless, wasting their time now, their effort, and there are so many people who need their help more. You begin to hate yourself. You are a worthless parasite. You are consuming the lives of your loved ones, who have given you so very much. You feel overwhelming guilt that its all your fault. "I have nothing to offer, I have nothing to show, I have nothing to give. ...life is like a living hell'. You lose trust in yourself and who you are.  You lose trust in what your body is telling you. Before CBT life was a living hell, but CBT has destroyed your belief in yourself. It has taken away your internal safe spaces. It has added to your burden of unbearable suffering. The combination of CBT and GET has been absolute disaster. You find yourself much worse than you were before, that is if you aren't carted away to some mental institution where you die an unimaginably traumatic death. Your body is hell. Everywhere you turn is hell. There is nowhere to hide.   'I don’t know where to go or how to proceed with so much stacked against me.  I’m not sure how to carry on with things; I can’t..... ' Jackie Macklin, ME sufferer. Death is a merciful release from such a living hell.

What can you do?

1 ''Listen to the voice of ME sufferers. Listen to the voice of Parliament. Stop GET. Stop CBT. Delay is more unbearable suffering and in all probability more loss of life.''

2 ''Retire the term CFS to describe ME. It has caused endless confusion and been responsible in part for enormous suffering. Delay is more unbearable suffering and in all probability more loss of life.''

3 ''Retire the Oxford Criteria to diagnose ME, in line with the NIH. Treat all existing or current research using these criteria as unfit for purpose. Malaise after exercise is the defining feature of ME. The most favoured current criteria internationally, are the Canadian Consensus Criteria. Delay is more unbearable suffering and in all probability more loss of life.''

4 ''Insist NICE's review of ME is undertaken by voting members who accept that malaise after exercise is the defining symptom of ME. Currently the majority on the voting committee are linked to the deeply flawed Oxford Criteria. Delay is more unbearable suffering and in all probability more loss of life.''

5 ''Underwrite the supercharging of ring fenced funding for ME biomedical research, £20 million over 5 years. 'the UK has not funded any biomedical research since 2012.''' Dr Philippa Whitford MP. ''Biomedical research needs to fully reflect the burden of the illness, and to make up for the all the lost funding. Delay is more unbearable suffering and in all probability more loss of life.''

6 ''Reinstate this illness in the British healthcare system as a physical illness, as defined by WHO. Delay is more unbearable suffering and in all probability more loss of life.''

7 ''Remove the need to reapply for welfare benefits, PIP and ESA, for those with severe ME. Awards for this incurable illness should be permanent for severe sufferers. Delay is more unbearable suffering and in all probability more loss of life.''

8 ''Plans need to be made to rehabilitate those whose lives have been destroyed, whose lives have been traumatised or damaged by the way our healthcare system treats this illness. ME sufferers, their loved ones, doctors, nurses and so on. Any contact with the NHS can be trauma inducing for ME sufferers and their loved ones. A great deal of work needs to be done to re-establish trust.''

9 Set up a compensation fund for ME sufferers who have suffered unimaginable institutional abuse.  'If GPs, perhaps because they have not been trained, are making medical prescriptions for treatment following NICE guidelines because Ministers and the chief medical officer have not acted, if that treatment is harming people, and if that continues until October 2020 there will, as I said in my intervention, be a case for those who are harmed to go to court and seek compensation.'  Sir Edward Davey MP

Make the NHS the best it can be

 'The system is broken and money alone cannot fix it. ' NHS Dr Aseem Malhotra whose mother, an NHS GP, has just died in the NHS.

British healthcare scandals become public with alarming regularity and persistence - hundreds of baby deaths at Shrewsbury, baby deaths at Morecombe, hundreds of deaths  at Stafford,  deaths of more than 1,000 mentally ill patients at Southern not deemed important enough to properly investigate, and on and on. Such patients and their loved ones repeatedly describe a culture of impunity, of arrogance, of a failure to listen to patients, doctoring of records, a failure of inspection, of denial, of patient blaming. It is spread wide across the system. Health outcomes, the defining measure of a health system's success or failure, are not pretty. Our healthcare system underperforms against almost all of those of other similar countries around the world in this respect, even though it has middle ranking funding. We are suffering, we are dying unnecessarily. In the last decade user satisfaction has dropped by 14%. The people of this country, ME sufferers, deserve better. We want better. We need better.

There needs to be change driven by the principle that excellent healthcare not only needs to be done, but that it needs to be seen to be done. The current administrative structure is not working. Transparent enforcement mechanisms for those who behave badly which are entirely independent need to be created. Independent and impartial procedures for investigation and sanction, need to be created, effective monitoring systems,  effective complaints procedures. Those who work and those who use the healthcare system need to be fully represented on decision making bodies, truly making it Our NHS. 70% of us want to be involved according to the Kings Fund. The transparent democritisation of our NHS can help to make it the best it can be.

Life or death election

This is a life or death election for some ME sufferers. Which of you will act to show that you want to make the NHS the best it can be? Which of you will gain the trust of the million voters or so effected by ME? Which of you will gain the trust of the millions of those affected by MUS? Who will they vote for?

A final thought

ME does not discriminate. The next cold you have could signal the beginning of your lifelong experience of ME. Dealing with this matters for all of us.

Thank you.

Anon.

I'm sorry. I daren't give my name.