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55 Reasons why it is difficult to treat a person with Very Severe ME


Stonebird : the lived experience of Severe ME


Greg &  Linda Crowhurst

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 individuals symptoms to help identify them accurately, or protect people with Very Severe ME and provide informed documents to help inform others.
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.


100 things you cannot do with Very Severe ME



1 You cannot think clearly, concisely or at all.

2 You cannot deal simply easily or specifically with questions.
3 You cannot always speak.
4 You cannot coordinate sight, mind and action.
5 You cannot bear sound.
6 You cannot bear ordinary light.
7 You cannot bear physical contact.
8 You cannot chat or have a simple easy conversation with anyone in person or on the phone.
9 You cannot hold implements or carry things.
10 You cannot swallow reliably or safely.
11 You cannot eat a full range of ordinary foods, but have to follow bizarre or restricted diets and you certainly cannot eat your favourite food.
12 You cannot eat with a knife and fork or necessarily feed yourself at all.
13 You cannot eat at normal meal times.
14 You cannot sleep at normal times.
15 You cannot move at whim.
16 You cannot get to the toilet when you need to go.
17 You cannot brush your hair or bear to have it brushed.
18 You cannot wash your hair regularly for months on end or see a hair dresser.
19 You cannot remember things.
20 You cannot bear background noise.
21 You cannot bear to be in the presence of other people,even those who you know and care for.
22 You cannot see the range of medical people you need to see: consultant,doctor, physiotherapist, nurse, OT, even if they are willing to visit you.
23 You cannot fill in forms.
24 You cannot hold a pen.
25 You cannot deal with instructions or information.
26 You cannot deal with incoming communication.
27 You cannot travel .
28 You cannot go on holiday.
29 You cannot predict what you can tolerate in any one moment.
30 You cannot explain your reality.
31 You cannot move when you want to.
32 You cannot ride a bike.
33 You cannot be around people in public places.
34 You cannot keep appointments.
35 You cannot comply with external demands.
36 You cannot think.
37 You cannot remember.
38 You cannot feel properly
39 You cannot have weekends away.
40 You cannot have visitors, even close friends or family.
41 You cannot go out socially anywhere: theatre, cinema, pub, club, cafe, restaurant.
42 You cannot be included in family gatherings, weddings, funerals, birthday party's.
43 You cannot attend meetings or gatherings of people at all.
44 You cannot tolerate perfume products on yourself or anyone else.
45 You cannot wash or iron your clothes.
46 You cannot clean the house.
47 You cannot even bear to use a wheelchair though you need one to move.
48 You cannot read a book or a document.
49 You cannot sort out issues that need dealing with.
50 You cannot tolerate medicine, even if you need it.
51 You cannot breathe properly.
52. You cannot tolerate medicines.
53. You cannot easily swallow pills.
54. You cannot cope with motion.
55. You cannot cope with certain colours.
55 You cannot have blood pressure taken or blood tests for the pain and hypersensitivity of your skin.
56 You cannot sit up.
57 You cannot stand.
58 You cannot climb stairs.
59 You cannot walk.
60 You cannot exercise.
61 You cannot run.
62 You cannot play games.
63 You cannot swim.
64 You cannot cartwheel.
65 You cannot dance.
66 You cannot make plans.
67 You cannot sleep normally.
68 You cannot rest.
69 You cannot relax.
70 You cannot pace yourself.
72 You cannot hold things.
73 You cannot balance properly.
74 You cannot feel your body properly.
75 You cannot sense where parts of your body are ( proprioception)
76 You cannot manage without help, but you cannot access the help you need when you need it.
77 You cannot articulate or describe the complex sensations and distressing physical reality you experience.
78 You cannot have sex.
79 You cannot wear the clothes you want.
80 You cannot listen to the radio.
81 You cannot watch TV
82 You cannot listen to music.
83 You cannot look after a pet.
84 You cannot bear the sound of anything in the room, the next room or the house or the environment, everything is too loud.
85 You cannot be normal in everyday situations.
86 You cannot deal with in /out demands that require thought and action.
87 You cannot tolerate the clock or the telephone or the fridge or the cooker or the kettle noise in your living space.
88 You cannot tolerate the smells of every day living.
89 You cannot tolerate the smell of smoke.
90 You cannot tolerate alcohol.
91 You cannot remain in normal contact with friends or family.
92 You cannot meet new people.
93 You cannot make new friends in person.
94 You cannot control your temperature.
95 You cannot control your weight.
96 You cannot do your teeth when you need to.
97 You cannot go to the dentist.
98 You cannot see an optician.
99 You cannot get your health needs met.
100 You cannot get physically comfortable ever.

.



This is my story

A story deserves to be told. My story deserves to be told. Why should it be that I can live in torment being continually harmed by everybody around me, without proper physical investigation or medical explanation and appropriate treatment or support. Without the dignity and respect afforded to any other person with any other illness?

No one would believe how bad it is for people, once they have a diagnosis of severe ME. No one would believe the medical neglect, harm, misinterpretation and misrepresentation.

No one should have to live in this state without adequate or appropriate medical investigation and support.

This is my story....


But I am too ill to write it....

Needing your husband to care for you

It is a hard thing to bear , needing your husband to care for you year after year and to see him have to give up so much to do that , to make the decision to put your needs first before other people, career, status, enjoyment. success, money , a life.


But harder still is to see how little support he receives, how little people really care about him, how when he has made the choice to love me and care for me, people do not seem to get it. They don't seem to see how stressed he is, how worried he is, how exhausted he is, how poor we are. Instead they demand he provides for them, meets their needs, cares about them too, runs around after them, engages in meaningless banter about their lives, punish him for not doing more for them, neglect his feelings and deny our reality. But never ask him about how he is, never ask how I am, don't even want to know how ill I am or how concerned he might be, how he might need help or support or kindness himself rather than just endlessly giving it to others. Do not understand the medical neglect. Do not even believe it.

Living with Severe ME means the carer is impacted too. We do not want sympathy. We do not want rescuing. We do not want patronising , denying or undermining. We actually just want sensitivity and awareness. Sadly this is all too often too much to expect or even hope for. It so rarely happens.

Mostly people go on without you. They act as if you do not care. They overlook you. They don't contact you or include you. They don't reach out. They expect you to be who you were before illness struck. Or to be stoic and strong. Only a few remain in genuine friendship. For that we are tremendously grateful.

Others get angry with you. They are at best superficial with you or do not even believe you. Mostly they just deny your reality and keep only minimal contact if at all. This is what is most hurtful. Not that people overlook me, but that people do not act with understanding or empathy to Greg.

It is not easy to stay in touch, to maintain relationships, we get that. It is not easy, but it is possible. It is possible to be interested, to find out about the illness, to find out what we are going through and to be kind.

The throw away comments on Christmas or birthday cards are the most annoying . 'Hope you are well.' Why do ordinary people not know that this is not an appropriate comment for someone with Very Severe ME who has been separated from normal life for 20 years, ill every single day? Is it that difficult to be sensitive, thoughtful, compassionate, caring?

If we added up the events we have missed, the moments of enjoyment we could have had doing the myriad of things we could have done together if I were well, our hearts would probably break from the sheer grief of it all.

But we do not go there. We seek for moments of love. We seek for moments of simplicity. We seek for moments of communion. And we seek to maximise them and be happy in whatever way we can.

To care for someone with Severe ME is not easy. It is not simple. There is no easy path through it. It is hard. It is painful. It is exhausting. It is lonely and it is disappointing, even boring at times. But nevertheless it is a gift and when given freely and with the intention to genuinely make a difference in a person’s life, there can be no greater gift.

I am therefore grateful beyond words for every moment we have lived together through this difficult illness, and I celebrate every triumph we have ever had in overcoming all the hurdles put in our way either through neglect, ignorance, deliberateness or abuse. The list of triumphs is many.



Waiting and hoping

I spend my day waiting

Waiting for the paralysis to lift
Waiting for the pain to decrease
Waiting for a moment when my brain might clear
Waiting and hoping that I will be able to bear you in the same room as me
Waiting and hoping that you won't make a sudden noise or movement that will tip me into torment and irritability
Waiting and hoping that you will be able to speak to me and I will be able to listen and not react in agony


Praying that the jets won't fly and the noise instantly paralyse me and hurt me
Praying that the neighbours will not speak loudly through the wall


Hoping there will be no building work or lawn mowers in the vicinity of my house to torment me
Hoping I can claw myself out of the hole which twenty years of constant allover pain and daily recurring paralysis and a host of other complex symptoms has forced me into
Hoping I can win the battle against noise that dismembers me,attacks and destroys me moment from moment without warning
Hoping that the fog in my mind will clear so that I can picture images and ideas and comprehend information, even simple stuff
Willing my teeth to stay pain free and not require treatment that is impossible to access
Desperately hoping that nothing will go wrong with my body that requires outside help


Too ill to see anyone
To ill to cope with noise
Too ill to cope with two-way communication
Too ill to cope with physical contact
To ill to deal with questions
Too ill to deal with finances
Too ill to risk physical investigation or treatment even at home Too at risk of harm if exposed to ordinary environments, to chemicals, to perfumes, to fumes, to chatter, to ordinary people doing ordinary things, to conversations, to banging and clanging, to touch or laughter even
Unable to communicate my physical reality or the danger ordinary things expose me to

 I live, vulnerable to misunderstanding, to misinterpretation, to mistreatment, to ignorance, to neglect, to harm, to hurt, to abuse, to misrepresentation

Mostly I live in empty spaces, in empty places,
too ill to move, too ill to explain,
too ill to convey my reality,
too ill to be seen, literally tortured, in agony, from noise and every day living in every moment I exist,
too easily misunderstood and
too ill to participate in research, attend clinics or see specialists, to be exposed to tests, even ones I need.

Certainly not represented by most organisations that say they represent ME, yet who only represent fatigue, who do not comprehend the slightest reality of paralysis and all the multitude of tormenting severe symptoms people with genuine very severe ME have.



The days are stultifying, the grief of countless losses piles up and topple over again and again and again down decades And still there is no genuine hope, while people talk of bicycle tests and activity management, exercise and cognitive behaviour therapy. Really?

While no one investigates my body and what is really going wrong in it and all that is left is theories, ideas and beliefs which dangerously get enshrined as truth And its all written off as a vague fatigue condition with not much really wrong. And all my symptoms are dismissed and swept under the carpet by the fatigue lobby

And that is not just psychiatry sadly, it's a whole host of other people who should know better, consultants, doctors, nurses, social workers, carers, patients even and all the people who accept it unquestioningly and go along with it, way too many unfortunately. If it wasn't so utterly devastating, damaging, serious and real, you might joke about the incongruence of it all.

Instead it's a life sentence, of unimaginable torture, necessary isolation and neglect caused by deliberate ignorance and misdirection, sadly perpetuated by people with power, who do not know, who cannot understand and who should not speak for us and should not be involved with us or claim to represent us. Yet sadly do. Only those who know from the inside about the reality of people with the most severe ME should speak about it, only those with true understanding. And that is way too few.

An holistic approach to caring for someone with Severe/Very Severe ME


IN THE ORDINARY WORLD, often you see something is needed, you see how to do it and you take action because it makes sense and is quite simple practically to do, but in the world of Very Severe ME particularly, nothing is obvious, nothing is simple and what appears to be simple can do a lot of harm if done without awareness, in the wrong moment and in the wrong way, without the person's co-operation and without working in partnership with  the person.

What might be considered insignificant or tiny achievements, such as being able to cope with moving the bedclothes, take a sip of water, open your eyes and looking at something, being able to tolerate the help needed to get to the toilet; these can be big events in the life of the Severe ME sufferer, even though the well person might take them for granted or not realise how huge they are.

In taking a holistic approach you need to take account of the person’s reality. You might reflect upon their experience from a mind, body, emotion and spirit perspective, before engaging with them.

It may help for you to be consciously aware of the following:

MIND:

There are complex cognitive difficulties  which the person may be  experiencing when trying to interact with you
There is likely to be a break to all  forms of communication in and out of the person.
Thought and information processing is often severely affected, therefore the person's understanding and comprehension  of what you are trying to communicate or convey or do, may not be as straightforward, simple or as possible as you imagine it should be.
The person may not be able to tolerate or understand any form of communication you make in any one moment. They may also not be able to communicate with you in any predictable or expected moment.
Cognitive dysfunction will interact in a complex way with other severe symptoms such as visual disturbance, noise sensitivity and  functional incapacity (for example a lack of motor control and muscle dysfunction) to make communication a major difficulty in both an inward and outward direction.
You have to think about how to communicate to the person in ways that they can tolerate, receive the information and understand it. You also have to think how to enable the person to communicate with you and what to do when direct communication is impossible. It  cannot be forced. Being prepared in advance for a range of possibilities and reactions is always the best way to approach helping someone with severe ME. Problem solving needs creativity in our experience.
Communication  is not simple and can be frustrating and complicated to understand and may change from moment to moment.

BODY:

The interaction of symptoms and the general level of pain and physical suffering  must be understood as much as is possible.
Every effort must be made not to hurt the person further or cause deterioration or distress.
You have to think about what you need to physically do with the person to help them and how to do it in the most careful sensitive way possible.
You have to understand the affect of physical contact.
You have to understand the affect of movement on the person.
You have to understand if the person can tolerate particular positions or not.
You have to understand the Central Nervous System chaos and crash that over stimulation causes.
You must allow adequate recovery time after any interaction to avoid further or more, long term deterioration.
You need to understand the post- exertional reaction to any stimulation or activity, no matter how apparently little or ordinary it seems to you.
You must understand that something quite small, like  too much pressure on the skin, on some other apparently unrelated  part of the body or exposure to even what you think is a slight noise or a small amount of light or just making a particular repeated movement in the visual field of the person, might still cause huge reactions in the persons body, such as numbness in throat, paralysis in tongue, paralysis in arms, full or partial body spasms, nausea, head pain, etc. and last for hours beyond the time you have spent with the person, making it harder to re-engage the next time you want or need to.

EMOTION :

Emotional lability is part of ME.
There may be physiological reasons for  a person being apparently emotional, such as hormone imbalance or drugs causing heightened emotional, even suicidal states, for example steroids and some anti- depressants.
Any negative care impact, even though unintended, is likely to cause distress and mistrust.
It is important not to misinterpret the physical experience and any consequent distress, as the person being over emotional or  unduly sad.
Pain and careless exposure to environmental stressors will cause reasonable upset.
The person with Very Severe ME, particularly, is likely to be extremely isolated and in need of comforting and affirming experiences.
Make sure that you do not misinterpret the person wrongly and label someone as difficult, depressed or over emotional, for genuinely being upset with reasonable cause, because you do not understand their experience.
If possible try to have happy moments which are uplifting.
The symptom experience itself can be frightening.
The lack of knowledge people, including carers and health practitioners have, can be frightening and makes the person with severe ME very vulnerable.

SPIRIT:

The connectedness a person feels with you will be enhanced if you get the  care right.
You need to convey reassurance that you care and that you are aware, so that you can flow together in any moment.
You need to convey kindness and genuineness.
You need not to bring discord into the room with you on any level, whether noise, light, busyness etc. .
You need to convey unconditional positive regard that you are there for and with the person and not only do you want to help them, but you want to help them in the right way.
The caring you exude in your energy will touch the person and uplift them, hopefully if it is right.
You need to not judge the person and keep trying to find the right moment to connect.
Quiet, centred, attentiveness is most likely the posture that will aid a feeling of connection and solidarity. Even so, symptom experience can be so extreme that the person simply cannot feel any affirming experience or good feeling from the interaction, no matter how well-intentioned, because everything hurts so much or is disturbing or the impact and after reaction is so great that it causes deterioration.
The person may need to be left alone to survive and not fit into a rigid regime or needs. Their need for space to cope may be paramount.
If the person indicates that they cannot tolerate carer input in any one moment, this needs to be respected and then worked out with the person how to meet their needs at some other moment.

You need to grasp this idea that a moment in time can make all the difference to the person with Severe ME; that even when something is totally impossible in one moment, it may be achievable in the next. We daily hope for better moments.

Often it may seem as if there is an empty space around the person, in which nothing is possible, yet if you are paying enough attention and are willing, able, gentle and patient enough, there may be a moment in which you can achieve something together.

Greg Crowhurst

For more information on the MOMENT approach,  please see my book “Severe ME featuring Justice for Karina Hansen

http://www.stonebird.co.uk/severemebook/severeme.html

Me and ordinary life


Staring
Cannot function
Feel out of step
With time itself
Dissociated 
From life
It passes by me
Whilst I
Sit
Or lie
Staring
Paralysed
Disengaged
from all worldly things
The distance
Between
Infinity and me
Seems equal
To the distance
Between
Me and ordinary life

A definition of ME

The Stonebird (informal) Definition of Severe ME

Severe ME is a hellish experience that you live and endure without treatment, cure or respect .
Severe ME is not knowing how to cope from minute to minute, moment to moment.
Severe ME is being tormented by people doing ordinary things.
Severe ME is being inhibited by paralysis.
Severe ME is being  totally ill, all the time.
Severe ME is being unable to  read.
Severe ME is being  unable to hold anything.
Severe ME is falling over regularly.
Severe ME is your mind not working.
Severe ME is being unable to speak on the phone.
Severe ME is finding that going to bed makes you  feel even more ill.
Severe ME is discovering that there is no  possibility of rest, ever.
Severe ME is being unable to see anybody because they make you more ill, because  you are  so hypersensitive.
Severe ME is not  knowing  what to eat that won't hurt you.
Severe ME is being neglected by the Health Service.
Severe ME is having to regularly have to prove you are ill, just to get your benefits.
Severe ME is being always in constant pain.
Severe ME is finding that everything you try to do hurts you  on some level somewhere.
Severe ME is feeling dizzy and disorientated most of the time.
Severe ME is spending your  life predominantly sitting in a chair unable to move or function , or in bed, paralysed.
Severe ME is being not  properly medically tested.
Severe ME is being unable to  find any clothes that don't itch you.
Severe ME is being unable to go to the shops to buy clothes.
Severe ME is finding that any  noise irritates you  to distraction.
Severe ME means that your mind lives in a sea of fog and emptiness.
Severe ME is finding that everything normal is out of reach.
Severe ME is being unable to  manage without help, all day long.
Severe ME is having  no energy.
Severe ME is living  in poverty.
Severe ME is being unable to  decorate because you are  chemically sensitive and  the paint would make you  more ill.
Severe ME is being unable to tidy away the things on your  desk or sort anything out because it's too complex functionally for you to do.
Severe ME is being unable to carry things.
Severe ME is finding that  everything in your world is hurting you , both inside  and outside you.
Severe ME is being unable to travel without torment.
Severe ME is finding that motion makes you  ill.
Severe ME is having  no real choices , apart from not to despair.
Severe ME is a torture and a nightmare.
Severe ME is constantly feeling as if you are screaming with agony inside.
Severe ME is being  more sick than an AIDS patient two months before death.
Severe ME is noticing that people  with terminal cancer have a better quality of life than you,  until they die.
Severe ME is being sick of not being understood.
Severe ME is being sick of the denial of your reality.
Severe ME is weeping  everyday with the sheer physical pain of your life.
Severe ME is having all  the things you  love  taken away  from you.
Severe ME is being unable to bear being  touched because of the pain and irritation that it causes.
Severe ME is your  body going dead and numb regularly, awake and asleep.
Severe ME is having  skin that crawls with intolerable sensations.
Severe ME is being  cognitively disabled.
Severe ME is finding that anything you do will lead to worsening pain, paralysis and numbness.
Severe ME is feeling like you are  dying.
Severe ME is having your  illness misrepresented and negated by a powerful psychiatric lobby that denies the physical reality of your neurological disease.
Severe ME is finding that  there is no one with any power or authority doing anything to change it.
Severe ME is being enraged by the untruths that exist about ME , that are accepted by professionals and society.
Severe ME is finding that your  hypersensitivity is increasing.
Severe ME is being persecuted because you are disabled and ill.
Severe ME is having to buy  own nutritional medicine and organic products; you cannot live cheaply as a disabled person.
Severe ME is never going on holiday
Severe ME is never going to social or family events.
Severe ME is having  to fight for everything that you should be entitled to.
Severe ME is a desperate thirst that is unquenched.
Severe ME is an extreme head ache that goes on and on, throbbing unceasingly, day after day, and all night without relent.
Severe ME is where thinking is so painful you can't do it.
Severe ME is going to sleep and waking up worse.
Severe ME is having no energy to start with.
Severe ME is struggling to breathe.
Severe ME is struggling to eat because chewing is exhausting and swallowing is dangerous.
Severe ME is struggling to live.
Severe ME is numb eyeballs and itchy, burning eye pain and scratchy dry eyes.
Severe ME is not being able to read because the letters are dancing in and out and up and down and there seems to be two of everything.
Severe ME is where words lose their meaning and comprehension disappears and is replaced by tormenting pain in your head and worsening pain in your body instead.
Severe ME is emptiness in your mind where colour and thought once existed.
Severe ME is sleeping all morning and awake all night.
Severe ME is needing the toilet again and again.
Severe ME is a bizarre world where nothing seems as it is and every reaction is opposite to what you would expect.
Severe ME is where no one tells you what is going on in your body,  to make sense of all the symptoms .
Severe ME is where you have to work it all out for yourself.

What do you do ?

This is my Linda, my strength, my rock. Last night 
I was close to tears, as I sat with her, her body,
 no matter
the hot water bottle, the raging wood burner,  ice-cold and getting colder, her legs, feet totally devoid of feeling and sensation, her beautiful hands, that used to play the guitar so exquisitely hanging lifeless and numb, her mouth too paralysed to open, her body draining away.

She is seriously ill.

What could I do ?

Anyone else you'd call an ambulance - infinitely more complicated when the person has Very Severe ME, making an ambulance crew likely to cause serious harm and a hospital environment more than likely to kill her.

What do you do ?

You sit, you pray, you try not to cry or despair.

You rage, inside, at the injustice, that she is left like to deteriorate, with nothing being done to help or take her ME seriously.

You wonder how you'd cope without  her.

Your love is all you've got.

That was last night. Today is no easier.

CBT & GET cannot and should never be used to treat the symptoms of ME

 NUMBNESS
PARALYSIS HYPOGLYCAEMIA DIZZINESS  FOOD
SENSITIVITIES/ ALLERGIES PAIN PARASTHESIS
HYPERESTHESIA SEIZURES MUSCLE SPASMS SLEEP
DISTURBANCEORTHOSTATIC INTOLERANCE
HEAD PAIN HEADACHE INSOMNIA VISUAL DISTURBANCE
PERCEPTUAL DIFFICULTIES BALANCE PROBLEMS
COGNITIVE DYSFUNCTION FLU-LIKE SYMPTOMS
SORE THROAT POST EXERTIONAL NEURO-IMMUNE
EXHAUSTION MUSCLE DYSFUNCTION MULTIPLE
CHEMICAL SENSITIVITY DRUG SENSITIVITY
PHOTOPHOBIA   LOSING/GAINING WEIGHT
DIGESTIVE ISSUES SWALLOWING DIFFICULTIES ACUTE
HYPERSENSITIVITY EMOTIONAL LABILITY
DIARRHOEA/IBS TYPE SYMPTOMS POOR TEMPERATURE
CONTROL  BREATHING DIFFICULTIES NAUSEA  HYPERACUSIS
VOMITING NEUROLOGICAL, AUTONOMIC, NEURO-ENDOCRINE,
IMMUNE, CARDIOVASCULAR GASTRIC DYSFUNCTION

A few of the ways Clinicians are failing people with ME


Focusing upon Fatigue and not the more serious Neurological/Cognitive, Autonomic, 
Neuroendocrine, Immune, Cardiovascular and Gastric manifestations.

Not focusing on enterovirus as the cause of the disease and not treating people 
with anti- virals that could be available.

Allowing wide and loose clinical  definitions which do not define ME at all.

Not standing up adequately, if at all,  against the  inappropriate involvement of psychiatry .

Allowing the mishmash psychiatric  CFS continuum to continue .

Professional arrogance.

Allowing psychiatry to push its own agenda, through active collaboration.

Accepting the medical establishment view that there are no tests that can be done.

Accepting the status quo rather than pushing boundaries and saying "No" .

Not admitting that they  do not know all that they should or could know.

Not being willing to do home visits to people who are frail and severely affected .

Not understanding how they themselves can do harm by their actions,.

Ignoring and not treating the most severely ill,.

Not  understanding or fully comprehending the severity of the illness.

Not comprehending that  the current  practice to only 'treat' the mild and moderate is 
to neglect the illness .

Not comprehending or speaking out together as one medical voice against the current 
clinics who are failing everyone by focusing on fatigue. 

Not making  it safe for people with genuine  ME to be seen.






On the horn of a dilemma

It is time to put my money where my mouth is !


After spending hours, weeks, converting my book to Kindle format, after solving unspeakable, hair-tearing technical difficulties, at huge cost to Linda and me, I am finally ready to upload a
nd publish "Severe ME" on Amazon.

Click, click....all fine, until...WHAT CATEGORY ? Filing your book under the most accurate category online is vital. No surprise to find there is no such thing as a "Myalgic Encelphalomyelitis" slot on Amazon : except there IS one of "Chronic fatigue Syndrome ".

Now HERE I find myself on the same horn of a dilemma that many of our charities and clinicians occupy : do I throw my principles to the wind and for the sake of "funding" accept the CFS classification - ensuring potential sales for my book, or do I opt for nothing ?

I'd rather have nothing.


http://www.amazon.co.uk/Severe-featuring-Justice-Karina-Hansen-ebook/dp/B00HM8Z5VC/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1388565545&sr=1-1&keywords=Severe+ME+featuring+Justice

Severe ME now available as a Kindle book

HAPPY NEW YEAR !!!

Just to let you know that "Severe ME, featuring Justice
 for Karina Hansen" is now available as a Kindle book
 on Amazon.

The eBook version contains an extra chapter by Kara Jane Spencer and is fully hyperlinked - so that you can click onto any reference and access the source material: that took some doing !

I was very anxious to release "Severe ME" as an eBook, following enquiries from readers- some  people find a Kindle much easier to hold.

It is currently being offered at a special low price.

http://www.amazon.co.uk/Severe-featuring-Justice-Karina-Hansen-ebook/dp/B00HM8Z5VC/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1388565545&sr=1-1&keywords=Severe+ME+featuring+Justice