Stonebird

Myalgic Encephalomyelitis  is a secret hidden Neurological  illness that is poorly diagnosed and misrepresented as fatigue. The Chief Medical Officer confirmed over  twelve years ago that  ME  should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease and that there is serious medical neglect of the most severe patients. ( http://www.erythos.com/gibsonenquiry/Docs/CMOreport.pdf ) Today research into Severe ME  is still almost non-existent, the  illness has been so frequently misinterpreted and understated, that the standard knowledge and provision that should be there just isn't. How do you offer care to someone in so much physical pain, that even the tip of their nose throbs in agony, who cannot bear light, noise, sound, touch, who is so profoundly hypersensitive that  every move you make can be a torment, threatening to push them into even more ext...

When I am in the chaos of unutterable indescribable agony I cannot necessarily feel God.  The power of  the physical experience is huge, vast and all encompassing. I cannot bear the moment I am in. There is no other moment than this one and it seems to spread out to all eternity in an eternal moment of excruciating torture. All focus must be on coping, on bearing the unbearable, on remaining, on the pain itself, for there is no place that is not pain. All focus must be on coping, on bearing the unbearable, on remaining, on the pain itself, for there is no place that is not pain. There is no place that is not agony , there is no place that is not on fire with the violence of hurt, within the physicality of the body. The pain screams non existence at you. The pain will consume you. It is not easy to feel spirit in this place. Your mind is huge , it can cry out, but whether it can hear or receive a reply is unlikely. The pain alone is all consuming. You just want it to sto...

The other day was impossibly hard. Suffering is not pleasant to witness, my wife's suffering reached a  new extremity, verging on despair : where is God ? God seemed absent, despite constant prayer. My response was far from adequate. Continued unrelenting repeat paralysis on a daily basis is unbearably hard to be a bystander to, especially when it has gone on for decades without adequate recognition or medical intervention. How do you keep picking yourself up and carry  o n ? Of course I understand it is the illness; that the pain and loss , tearing away at every shred of my self esteem, is profound, naked, raw suffering. Her distress , the pain of screaming multiple hypersensitivity, of a body scalded in agony, is not a personal attack on me, yet nonetheless it assaults me , leaves me feeling hopeless and helpless to make any difference . The constant knowing that I have not been able to save her from her unimaginable daily agony undermines my self esteem . Bein...

I read with great interest Dr   Lucinda Bateman's  and  Prof Jason's  comments on SEID . Unfortunately ME and CFS are not the same,  so the IOM's starting premise is wrong.  In M.E. you can never go along with a compromise or a wide  fatigue definition.  The IOM  tries to create a disease definition, SEID, out of an impossibly disparate group of poorly defined fatigue conditions,   unfortunately including ME within them. To its credit the Report acknowledges the ME-International Consensus Criteria , inexplicably, however, it  ignores the volumes of research outlining the Neurological, Autonomic, Neuroendocrine and Immune system malfunctions that constitute M.E. , a disease at least as disabling or more disabling than other chronic diseases such as lupus, multiple sclerosis or rheumatoid arthritis, more extreme than end-stage renal disease and heart disease with a sickness impact equivalent to that of terminally ill c...

As others have noticed, the ME Community is splitting between those who have CFS and those who have neurological ME . One group laps it up, the other is outraged.

Our hearts go out to Vanessa Li's family. We understand the physical pain of M.E.;  we know how impossible that pain is to describe.  Vanessa could not go on any more. Her loss to us all, this brave determined woman, who started the Microbe discovery Project, from her bed, from cushions on the floor, is tremendous.   We ask : how many more people will be pushed, by M.E.,  an despised, awful,  , ignored, untreated, disease,  to kill themselves ? Where is the hope ? Vanessa wants her death to serve. It will. Shout ! Shout ! Shout ! Shout as never before, it is so urgent now,  for the truth of M.E. Make sure it is separated from CFS- and SEID !! Protect the integrity  of M.E. as a distinct neurological disease, separate from other conditions. Make sure you are not misrepresenting M.E. yourself in your language and actions. Until the nature of M.E.  is properly understood there will be no hope - people will be harmed and ...

The Science Media Centre and the Psychiatric Lobby Greg Crowhurst In a brilliant blog post, Utting Wolff reports upon  how "deafening" the  “ s ilence surrounding the IOM report in the UK media" is . Whatever your views on the IOM Report : good news perhaps for CFS, maybe not so good for M.E – the issue as Utting Wolf points out, is how little coverage this landmark  Report got - as opposed to the global, front-page headline coverage just about everything the psychiatric lobby puts out, receives. As Utting Wolf suggests, imagine how different it might have been if the IOM had recycled the “intellectually embarassing” psychiatric line that ME is a "non disease", a somatoform disorder, maintained by abnormal or unhelpful illness beliefs, that the patient can 'recover' by adjusting their dysfunctional beliefs and behaviour, proposed to be the maintaining factors in ME for example unhelpful, anxiety-provoking thoughts and kin...

Linda collapsed last night, her quiet sobbing, the immensity of pain,not able to carry on. This is a place beyond human endurance.

It can be extremely difficult and challenging to reach out to people with Severe ME whose reality is virtually unimaginable. The person is likely to experience complex cognitive dysfunction, blocking every level of communication, making it extremely hard for them to explain , articulate and identify, from the inside, the profound level of suffering they endure : how unimaginably ill they are in every moment and how massively at risk they are from being harmed through unawareness or ignorance. The effort of speaking, if the person is able to speak, can be too much possibly lead to a post-exertional crisis. The pain and acute physical discomfort they suffer, makes it difficult for them to concentrate and deal with complex interactions with other people, especially as the interaction itself will most likely increase their pain even more. It is essential that anyone trying to communicate with a person with very severe ME understands the way the person communicates, wha...

A response to Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Redefining an Illness Committee on Diagnostic Criteria for ME/CFS February 10th, 2015 Stonebird Greg Crowhurst This Report, which has met with great resistance from patients and clinicians, may or may not be well intentioned, but it is deeply flawed. It tries to create a disease definition, SEID, out of an impossibly disparate group of poorly defined fatigue conditions, while failing to recognise the neurological disease Myalgic Encephalomyelitis, especially the most severe symptoms, at the same time insisting that ME and CFS are the same – this is just incorrect. It would be good news for people with ME if there were recommendation for a separate Myalagic Encephalomyelitis pathway , one with medical clarity and integrity at the centre, but that is not the case. SEID is a tragic mishmash of ideas, fundamentally fatigue focused- it is likely to play squarely into the hands of clini...

A maelstrom of emotions floods my mind. Anger, disappointment, yet betrayal leaves the sharpest tang. Hanging up, I immediately replay the conversation: “ So what should all these negative blood tests tell you?” “That the correct tests don’t exist yet?” “Or, that you do not have a physical problem” “We will accept you back when you are mentally ready to begin treatmen t.” M.E sufferers are familiar with this attitude. It usually manifests in the more alternative treatments our desperation has led us to. A lack of yogic control over the autonomic nervous system dismissed as being not “ready to heal”, bad karma. The bottom-line is clear – we are to blame for remaining sick. This was different – this was the NHS Chronic Fatigue Service. For three months two nurses sat in my home scattering endless pie charts and completing countless activity logs. They reassured me they believed M.E/CFS was definitely a real illness, but until a cure was available this was the most ...

I am  fiercely proud to be a nurse, with 31 years experience- 21 spent caring day and night for someone with Very Severe M.E. This is an extract from my forthcoming book : " Severe M.E : Notes for Carers ." As nurses we have a duty to speak up when we see wrong practice,which unfortunately abounds in M.E., because of the ongoing confusion with chronic fatigue and a lack of awareness of the difference. In all my experience, a nurse who cares for someone with M.E. needs to be:  A person of integrity Wise Honest One who lives by the nursing code. One who listens to the patient – not to do so, is to potentially cause much harm. One who has the courage to speak up against misinformation, misinterpretation and mistreatment. A person with great self-awareness. One who knows that Myalgic Encephalomyelitis (M.E.) is not a mental health disorder. One who knows that M.E. is a serious neurological disease with multi- system  dysfunction. One who knows that ...

We are only here briefly Our life burns with us Even if it is smaller, dissipated, flickering, with ME We must do what we must To shine To speak To stand up For ourselves For there is no effective level Of representation Out there Where it counts. ME symptoms go unrecognised Untreated, Mislabelled Undiagnosed Misrepresented Mistreated. Confusion And complication reigns Where a straightforward, Honest Medical pathway should exist. Meanwhile Precious friends and acquaintances Die From lack of knowledge, Lack of Respect, Physical neglect, If not outright harm Done to them. When will it be enough For the Medical Establishment To be ashamed? For the Government to act With genuine integrity? When will our lives be equally treated To any other acceptable disease? Deliberately covered up And negated By a Fatigue campaign That spans decades, When will our voices Be heard And real change come? When wil...