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UK Minister of State confirms ME and CFS are not the same.

Norman Lamb, UK Minister of State for Care and Suport,  has written to me. His letter contains the following clarification  :

"The use of the composite term "CFS/ME" is not intended to imply unanimity of aetiology of conditions covered by the term, or indeed to suggest that all conditions which fall within the scope of this term are equal in terms of severity of impact. The use of an umbrella term is also not intended to imply that fatigue syndrome and myalgic encephalomyelitis are equivalent "

He also stresses that "The Department of Health classes CFS/ME as a chronic neurological condition and we are clear that CFS/ME is a chronic illness and health and social care professionals should manage it as such."

Even when


Even when the noise has temporarily lowered
The echo vibrates, reverberates , resounds physically around my body, tearing at my ravaged guts, my muscles tremble then shake violently out loud
Diminishing me
Demolishing me
Damaging me
Dementing me
Still
Even when the paralysis looses its grip for just a second
Still it clings to me pulling every cell towards total incapacity time and again without relent
Halting me
Hurting me
Hindering me
Harming me
Still
Even when I have managed to move my finger or my toe or my eyelid or my mouth
The inability still lingers, lurking in every muscle
Reducing me
Redefining me
Ravaging me
Rasping at me
Still
Even when the headache finally lowers,
The head pain and body pain is ever present, no cell unaffected
Shouting at me
Screaming at me
Scorching at me
Sundering me
Still
Even when the moment by moment external assault diminishes slightly ,the  constant, internal, pounding bodily assault remains, harming me with its ever presence, never leaving for a millisecond
Tearing at me
Torturing me
Tormenting me
Trying me beyond endurance
Still

The Big Shave 2013 : please support Amy and Sharon


"Hello! My name's Amy, I'm 30 years old and I live in Winchester (Hampshire). I have suffered from this horrid illness M.E. for over a decade and am mostly housebound and often bed bound. Every year I try and do something in my own little way to raise funds for charity, but when you have severe M.E. you are quite limited in what you can do!

 In the past I've done a sponsored silence and sponsored screen free weekend, as well as giving up Birthday and Christmas money to raise awareness and money for M.E. However, each time that I do, I am very aware that it is only those in the M.E. community or their immediate friends and family who donate. Very rarely does the news travel to the general public. I realised it was going to take something a bit bigger to do this and given that my body won’t allow me to bungee jump or parachute jump... sadly, I have made the bold or should I say bald decision to shave my hair off to raise money for charity!! Very drastic I know, especially as a female, however I hope this small sacrifice will show my dedication to the causes I hold dear, as well as the desperate longing to see my friends and myself recover from this horrific illness that is destroying our lives.


 I have been told it will take 2-3 years at least, for my hair to grow back! so it really is a sacrifice for me, but a totally worthy cause! I couldn't decide which two of my favourite charities I should donate to- Invest in ME are a charity planning to start the first M.E biomedical research and treatment centre in the U.K. Raising more funds will allow the bio-medical research to begin. The 25% M.E. Group are a support group for severe M.E. sufferers. Their advocacy service have given me incredible support and practical advice over this past year. My advocate has been my rock during desperate times. However sadly she is just one person and has a long waiting list. Raising more funds would allow the charity to expand the service. So I have decided to give you the option of choosing who you would like to donate to. When I shared my idea with the M.E community, I found several others who wanted to join in..."




 "Hi, my name is Sharon Hollier. I am in my 40's and live in Welwyn Garden City, Hertfordshire. I first was diagnosed with M.E. in 2000 and in 2004 I managed my symptoms so well that I was able to work part time but started relapsing in 2008 and had to give up working in 2010. My teenage son had to give up school at the age of 12 because he also has M.E. He uses the internet on his computer to learn, research, play and communicate with his friends in their homes. 

I have always wanted to do something crazy for an M.E. charity and was inspired by Jessie J, on Comic Relief, to have my head shaved like hers. I get quite emotional going to other charity events and thinking that my son is house bound with M.E. and there is little that could be done for him. 

This is my chance to raise some money and awareness for an M.E. charity."


The Big Shave 2013 Press Release is available here :

http://www.stonebird.co.uk/bigshave.pdf



Announcing Unstoppable Spirit

This is just to announce my new book, written with much love for all who suffer and struggle - God bless us all.


Unstoppable Spirit is coming !

Just got  back from my cycle ride today - the final proof
 of Unstoppable Spirit has arrived ! 

It is almost ready.




Every moment, with Very Severe ME


Every moment is a  moment of extreme limitation
Every moment is a moment of constant and severe physical torment
Every moment is a moment of total constant continuous pain everywhere
Every moment is a moment of unpredictable reaction
Every moment is a moment of feeling severely ill.
Every moment is a moment of numb limbs.
Every moment is a moment that the environment is hostile
Every moment  is a moment where noise is harmful, damaging and dangerous.
Every moment light pierces and impacts painfully.
Every moment  is a moment that the world is inaccessible. 
Every moment the environment is hostile and unpredictable.
Every moment is a movement away or towards paralysis.
Every moment is a moment of inability.
Every moment is a moment of brain fogged unreality.
Every moment is a moment of difficulty interpreting incoming information.
Every moment is a moment of physical difficulty.
Every moment is a moment of physical distress.
Every moment is a moment of  profound disability.
Every moment is a moment of need.
Every moment is a moment of incomprehensible complexity.
Every moment is a moment that harm and deterioration can be triggered instantly.
Every moment is a moment where environmental stress can be catastrophic. 
Every moment is a moment of uncertainty.
Every moment is a moment of challenge.
Every moment is a moment of unutterable illness.
Every moment is a moment where expression is incapacitated.
Every moment is a moment where desire and ability do not match.
Every moment is a moment where demand and expectation are unreasonable. 
Every moment is a moment open to misunderstanding.
Every moment is a moment open to misinterpretation.
Every moment is a moment open to distressing reactions.
Every moment is a moment where you cannot do what you want to.
Every moment is a moment of medical neglect.
Every moment is a moment of fractured reality.
Every moment is a moment of unpredictable experience
Every moment is a moment of enforced isolation from normality.
Every moment is a moment of separation from people.
Every moment is a moment of desperation for stillness and quiet.
Every moment is a moment that you do not know for certain what you can or cannot manage to cope with. 
Every moment is a moment where energy is dissipated, lost or suddenly gone.
Every moment is a moment followed by deterioration and post- exertional reaction.
Every moment is a moment you have to try and figure out what you need to survive.
Every moment is a moment that needs to be totally flexible in approach and response.
Every moment us a moment where you cannot predict what comes next.
Every moment is a moment where you cannot  rest because rest is unachievable.
Every moment is a moment where you cannot rely on what you know, because something new and worse happens in your body for you to deal with.
Every moment is a moment where you need help but cannot access it as you need it.
Every moment is a nightmare of physical torture.
Every moment is a moment of complex symptom interactions and underlying physical malfunction.
Every moment is a moment where you do not know who is safe to trust.
Every moment is a moment when the answers are not obvious.
Every moment is a moment where the underlying disease has not been properly investigated. 
Every moment is a moment where systems fail you on some level.
Every moment is a moment where you are overlooked and buried in a sea of fatigue language irrelevant to you.
Every moment is a moment of impossibility.
Every moment is a moment of broken communication pathways .
Every moment is a moment of blocked pathways to ability and connection.
Every moment is a moment of  knowing that Very Severe ME is  
not on the political agenda.
Every moment is a moment of knowing that Very Severe ME is not in most people's minds, awareness or experience.
Every moment is a moment of knowing that there is no national universal biomedical response to people with Very Severe ME .
Every moment is a moment where you know the government is not dealing with the vested interests underlying ME policy.
Every moment is a moment where you know that the misinterpretation of ME as a fatigue illness leaves the most profoundly ill still open to mistreatment and at risk of harm.
Every moment is a moment  that you are waiting for proper medical validation and explanation that simply does not come. 
Every moment is a moment you pray you do not need additional medical interventions that you simply cannot engage with and that will harm you in trying.
Every moment is a moment that people get further away from engaging with you.
Every moment is a moment that you are less seen and known in your community.
Every moment is a moment that your body does not feel ordinary or respond in ordinary ways to ordinary things. 
Every moment is a moment of knowing that people just don't get it.
Every moment is a moment of knowing that people simply cannot comprehend or accommodate the severity of your illness. 
Every moment is a moment  where, whether adult or child, you can be sectioned for a mental health illness that you don't have because of misinformation and lack of medical tests, treatments and knowledgeable consultants.
Every moment is a moment you can be mislabelled and denied.
Every moment is a moment that you simply do not know if you are dying and no one can tell you.
Every moment is a moment of injustice.

Greg & Linda Crowhurst 2013
Stonebird : the lived experience of Severe ME

55 reasons why people with Very Severe ME cannot access health care.


Greg & Linda Crowhurst 18th March 2013

All the time that ME is treated only as a fatigue illness the health needs of the very
severely affected, who feel unimaginably ill in every moment, who are not generally part of research and whose experience is poorly if at all understood, are massively at risk, for some of the following reasons - this is not an exhaustive list by any means :

1. It is impossible for the person to travel to a clinic or a hospital.
2. It is extremely difficult to find a knowledgeable GP or consultant .
3. There is little, if any choice of biomedical ME consultants.
4. Knowledge of how to approach or communicate with a person with Very Severe ME is minimal.
5. The system expects people to fit into it and is not very accommodating of those who cannot.
6. Hypersensitivity to touch makes physical contact unbearable, dangerous, impossible without harming the person with Very Severe ME.
7. Hypersensitivity to noise makes it difficult to impossible to bear the sound of the voice of the GP or consultant, let alone all the background noise and any other noise exposure.
8. The impact of noise may cause the person to be damaged and physically harmed for weeks, months, even indefinitely.
9. The impact of chemical sensitivity means the person cannot go into environments where ordinary cleaning agents, perfumes, chemicals are used.
10. The person with multiple chemical sensitivity cannot bear to be in the presence of people wearing perfume on their body or clothing. It will harm them and cause increase in symptoms. They cannot afford to have anyone visit them and bring their perfume and chemicals into their house, without dire consequences.  
11. Light sensitivity may make it impossible for a person to be in a room with ordinary light. Exposure to light can be agonising and harmful.
12. It may be impossible for a consultant to examine a patient or write notes or see instruments in low to dark light, which is the only way a person with Very Severe ME can be seen; even the noise of a pen on paper can be too much to bear.
13. Cognitive issues make it difficult for the person to remember what needs to be said, to access information within their mind .There are blocks on every level of communication in Severe ME. Communication requires inward and outward pathways to function properly; these are not there, reliably or at all, for the person with Very Severe ME.
14. Processing difficulties in the brain make it difficult to impossible to understand questions or information and to answer adequately or comprehend meaning. Any mental demand can lead to massive deterioration: instantly.
15. There is not enough energy for the person to explain their history and symptoms or express their concerns about their health, even if the person can temporarily access it. The effort of speaking, if the person is able to speak, is too much and can lead to a post-exertional crisis. The full reality of a person's disability and illness experience can be missed if the moment they manage to communicate is considered the norm, when it is in reality rare to impossible. 
16. Extreme pain and physical discomfort make it difficult to concentrate and deal with complex interactions with other people, especially as the interaction itself will most likely increase the pain even more.
17. Paralysis makes any interaction impossible, you cannot function when you are completely paralysed either mentally or physically; you cannot even speak or open your eyes. Transient awake paralysis can hit any muscles at any moment.
18. Drug sensitivity and allergy make it risky to even attempt to try and take new drugs and nutritional medicine, even if needed.
19. Any drug at normal dose is likely to be too high for the person with Very Severe ME or may not be tolerated at all, even at a lower dose.
20. If regular injections are suggested/required, the treatment may not be accessible because of skin sensitivity, pressure sensitivity, neurological and muscle pain, hyperesthesia, the risk of intolerance of the drug, the inability to cope with another person in the room, the noise and chemical exposure, the energy required to interact, is unlikely to be there. If the person is required to be in a different posture, it is likely to be impossible for them  and can endanger their health to try.
21. A blood pressure cuff can be too painful to put on and bear the increased pressure, as it is pumped up. Harm can be done if this is ignored.
22. Taking blood samples, may be difficult to impossible, in any one moment, especially if you have to apply a blood pressure cuff and the person cannot bear it. Increased pain and exacerbation of symptoms as a consequence may be persistent. Veins may be hard to find or persistently collapse, causing additional stress and difficulties gaining enough blood. Pain may be so extreme that the additional pain of a needle puncturing skin may be too much to tolerate. Extra time and flexibility are always required, plus a willingness to adapt to the persons physical reality.
23. The weight and pain of a cannula pressing on hypersensitised painful skin and muscles may be intolerable.
24. Various different postures required may be impossible to achieve for examination. 
25. Physical contact itself, required for physical examination, literally causes deterioration of symptoms and increased pain, spasms, paralysis, cognitive dysfunction to worsen. There will always be a post- exertional reaction, which is essential to consider and take into account and can be extreme and lead to massive deterioration and distress. 
26. Providing a urine or stool samples is not the simple act that it is for ordinary physically functioning people. How is the person to capture the urine or stool with paralysed or numb hands with poor co - ordination, spasms, muscle dysfunction. How is the person to understand instructions with severe cognitive dysfunction similar to Alzheimer's?
27. Any test  or treatment involving equipment is likely to be impossible to manage and potentially harmful from over exertion which leads to cognitive and physical deterioration and risks the persons ability to tolerate or cope with any deterioration especially if the impact lasts months or years. The health of the very severely affected is so frail that inappropriate intervention can even lead to death.
28. Two way communication may be impossible and even if possible will be limited complex and potentially harmful, leading to severe post- exertional impact. It is essential that anyone trying to communicate with a person with very severe ME understands the way the person communicates, what they can tolerate and  how little energy they have and not ignore or forget the persons reality.
29. Experimenting with treatment is a very high risk strategy without knowing if the person will be able to tolerate recommendations and without understanding possible reactions. Should never be undertaken without due consideration of risk and possible side affects with careful consideration of possible impact in advance with a strategy in place to support the person should they choose to go ahead. People with very severe ME are desperate for help and so open to mistreatment and defensive blaming by professionals who simply have not understood the frailty or risk. They are at massive risk of deterioration and harm being inadvertently or carelessly done to them; for this reason a proper Risk Assessment should always be performed.
30. There are no NHS medical consultants, that we are aware of, to turn to, who have the necessary medical knowledge and experience, or who are willing to travel to the home, in the UK currently – there is  little hope of finding one . So many symptoms of the most severely ill are either ignored or dismissed and overlooked and not properly understood.
31. The knowledge base required to safely and adequately suggest and provide tests, treatments, ongoing support, for Very Severe ME with complex neurological dysfunction is apparently not available within the NHS currently or if it is, it is inaccessible to the most profoundly disabled and severely ill patients, with an ME label.  It is  not adequate to state ME is a fatigue condition and ignore swathes of symptoms that are profoundly disturbing, distressing and due to real physical dysfunction, which would be taken gravely seriously in other illnesses, such as stroke, heart failure, diabetes, cancer and other more rare genetic and other diseases. There is an associated confusion with what is co-morbid and what is ME – there does not seem to be a universal holistic, medical approach to the complex interaction of symptoms.
32. There is a need for partnership, in working out how to offer medical support and assistance safely. There is a need for humility and an ability to admit ignorance, lack of knowledge and to take responsibility for actions and reactions and wrong treatments and methods, especially a need to comprehend the very real risks and dangers of deterioration and opposite reaction to that hoped for or desired, that again we have rarely found.
33. A person with Very Severe ME is unlikely to tolerate  or cope well with the physical demands of invasive treatment, even if required. 
34. A person with Very Severe |ME is likely to be extremely drug sensitive ; they require an awareness of anaesthetic sensitivity that is generally not provided by professionals. The person and/or their carer is more often put in the situation of having to guess what is safe, as professionals are themselves seem unaware. How can they be given safe advice when their symptoms are not adequately investigated or properly medically explained, in the first place ?
35. People with Very Severe ME just cannot access everything required to negotiate with doctors surgery and hospital settings, treatments, follow up appointments, Physiotherapy, OT, medical assessments, operations etc. They are at grave risk of harm because of the dearth of aware medical consultants to back them up and make safe recommendations.
36. People who live away from direct contact with public places and people due to profound hypersensitivity and fragility are extremely vulnerable to exposure to infections and less able to fight them off, risking increased deterioration of health if they catch anything.
37. Because of the confusion and collusion with the psychiatric lobby and the wrongful focus purely on fatigue, it is extremely difficult to know who it is safe to trust and who will not harm you. Harm can be done through lack of understanding or misdirected interpretation of illness and lack of understanding of how to help the most severely affected, whose physical experience is so much more extreme and complex than those mildly affected, whom professionals are more likely to have encountered if at all.
38. Extremely physically ill hypersensitive people with severe multi- system dysfunction who have little tolerance for face to face interactions are easy to misinterpret.
39.  Extremely  physically ill hypersensitive people with severe multi- system dysfunction who have little tolerance for face to face interactions are easy to misrepresent in a health service determined to focus on a psychosocial interpretation. The current NHS pathway is woefully inaccurate and inadequate.
40. Extremely physically ill hypersensitive people with severe multi- system dysfunction who have little tolerance for face to face interactions are easy to misunderstand.
41. Extremely  physically ill hypersensitive people with severe multi- system dysfunction who have little tolerance for face to face interactions are easy to mistreat.
42. Extremely  physically ill hypersensitive people with severe multi- system dysfunction who have little tolerance for face to face interactions, are easy to have wrong and inaccurate reports written about them, expressing opinions as fact; wrong opinion based on lack of knowledge – this  can do much harm.
43. There is not enough accurate, adequate explanation or study of individual's symptoms to help identify them accurately, or protect people .
44. Private tests  and treatments are often too expensive to conduct.
45. Private consultants are often too expensive to pay for home visits, even if willing.
46. The person with Very Severe ME is physically profoundly ill and often cannot  undertake the risk of trying to get help, from an unknown consultant or doctor, when any interaction and effort leads to profound consequences of health deterioration, temporary or permanent or very long term.
47. Hospitals, outpatient departments and doctors surgeries are not generally geared up to accommodate multiple chemical sensitivities, noise sensitivity, light sensitivity, need for bed rest etc. Being exposed to the major physical trauma of travel and then being exposed to so many people, interactions and so many sources of noise and chemicals and infections will be too much for the person with Very Severe ME.
48. Sitting and standing or tilting will be extremely difficult to impossible for the person with very Severe ME and could endanger their health or be intolerable and harmful to attempt.
49.  Even lying down may be extremely uncomfortable and painful, even if this is necessary or unavoidable.
50. Even tolerating a wheelchair may be too physically uncomfortable and complicated for the person  to use, despite the apparent need. There are complex symptoms  affecting multiple systems, resulting in difficulties with motion, reversal of direction, vibration, noise, posture, speed  and pain, dizziness, visual disturbance.
51. Travel is a nightmare for the person with Very Severe ME. Motion, bumps, noise, vibration, smell of chemical and  upholstery, petrol, perfume , exposure to light, are intolerably difficult to bear. Sitting up may be unachievable. Travel lying down may be impossible and impractical. It may be impossible and dangerous to attempt. There will always be a profound post- exertional reaction. Toilet stops will be complicated , on many levels or  impossible to deal with.
52. Some people are so pressure touch sensitive, so hypersensitive and in pain that they cannot tolerate any noise protection, such as ear phones or ear defenders or ear plugs. Physical contact can literally harm them. They have no choice but to remain in a protected environment, with noise reducing curtains and triple sound proof glazing, sound proofed walls and doors etc. It is extremely difficult and challenging to reach out to such sensitive people, whose reality is virtually unimaginable. 
53. Pills and capsules are often not made of easily digestible materials,such as gelatine.  Medicines may have ingredients that are not tolerated and can exacerbate food sensitivities and gastric issues, which are already severe to extreme in this extremely ill group of people. The NHS does not appear to accommodate this issue well.  
54. Even with the best intention, medically knowledgeable consultants and safe pathways,  are simply not there currently, nor have they been, in our experience of  over two decades of seeking them within the national health service in the UK.
55. This is an illness that is extremely difficult to comprehend from the outside. With such complex cognitive dysfunction and blocks upon every level of communication, it is  extremely hard to explain and articulate and identify the profound level of dysfunction from the inside.  Reactions are often confusing and opposite to what would normally be expected to occur, so confounding the help that should be available but cannot sadly be accessed, rendering the people most in need, invisible and living secret tormented lives. 

In loving memory of Emily Collingridge


Defiant

Defiant?
Of course.
Who would not be
With so much discrimination
Negation
Neglect
Abuse
Suicide
And death?
Surely
It is time
For all the misdirection to stop.
We are  all so very very  physically ill.
We cannot live in the normal world.
Our hypersensitivity is an invisible barrier
That excludes us from normality
And opens us to
Misinterpretation
And denial.
We should be treated with respect.
We should be adequately investigated.
We should be understood and protected.
Yet instead we have to explain, articulate, argue our case
We have to suffer indignity upon indignity,
To risk mistreatment,wrong treatment or no treatment
To live in total isolation
Whilst professionals misinterpret our reality
Charities compromise the truth
And politicians toe the party line
Not wishing to upset the vested interests.
It is time to accept the fact that
ME has been abused and abandoned
Thrown to the psychiatrists
Cast on a sea of fanciful fatigue
Obfuscated in an ocean of wrong jargon and lies
Smoke and mirrors.
And who will  honestly speak out about it?
I will.
Defiant? Too right.

Rest is impossible

I despair sometimes - there is a very interesting article in by Jason et al , in Fatigue: Biomedicine, Health & Behavior Volume 1, Issue 1-2, 2013, on an "Energy Envelope" in ME; the premise being that a person with ME needs to learn how not to exceed that envelope. However the assumption that you can rest bears no relationship to my wfe's reality. She has Very Severe ME , rest is actually harmful to her, it increases her symptoms, pushes her further into paralysis. My wife cannot rest - relaxation, sleep, brings no relief, makes her much, much worse.

This Energy Envelope theory is far too simplistic for someone with complex needs, like Linda.

The fatal flaw in current ME research is that it does not appear to take into account the most severely affected - in what other disease would that be acceptable ?

By definition if you have Very Severe ME you are not able to attend a clinic, you are not able to engage in two way interaction, you are not able to bear visitors - no wonder this population, the most ill, are not being studied !

Jason's article bears no relationship to our world, where everything is turned on its head - where rest , for example, is impossible and any conception of setting a base line is pie- in-the-sky.

That said Jason's article is an excellent critique of CBT and GET.

http://www.tandfonline.com/doi/abs/10.1080/21641846.2012.733602

ME is not CFS MP3






I'm cryin
Mr psychiatrist my wife is dyin
every day I'm out there trying
to free her
from the CFS game
you're playin
ME is not CFS x 3
..but you know that anyway
WHO 93.3
I wish there was someone
she could see
I wish there was someone
who would take it seriously
ME is not CFS x3
..but you know that anyway
Mr psychiatrist
what is your deal
when will you admit
ME is real
we are paying a terrible price
you have compromised NICE
and the CDC
they call it fatigue and not ME !
ME is not CFS x2
..but you know that anyway

I cannot wash the ME away

No matter how many tears I cry
I cannot wash the ME away
No matter how much I shout
I cannot get over the barrier between my world and yours
No matter how much I try to move
The paralysis will not shift till it is ready
No matter how much I strive
I cannot make my energy materialise from nothing
No matter how many positive thoughts I think
It will not heal my physical dysfunction
No matter how hard I try to pace myself
I cannot stop my health deteriorating afterwards
No matter how much I long to be well
It does not make it so.
No matter how ill I am
I will not get better without proper medical investigation, tests and treatment.