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An Informal Guide to Part 3 of the DLA Form

An Informal Guide to Part 3 of the DLA Form for Severe ME sufferers

Greg Crowhurst 2009

For anyone with severe ME, the DLA application process can be an absolute nightmare, with some sufferers who are far too ill to even apply ; this is a terrible situation.

Part 3 of the Form is particularly gruelling ; it is so long and it is difficult sometimes trying to tease out all the issues, for severe ME is such a complex , devastating and still misunderstood disease.

Based on the principle : never be afraid to provide as much additional information as possible for the Assessors; here are some general suggestions , which might be of help.

Remember you are free to add as many extra sheets to your application form as you like.

For much more detailed assistance , Benefit and Work’s superb step-by-step guide to the whole DLA Form , is a fairly expensive but recommended investment :

http://www.benefitsandwork.co.uk/content/category/11/17/43/


Part 3 Getting Around Outdoors


Q .27 Do you have physical problems that restrict your walking ?

From a severe ME perspective :

Do you have paralysis following sleep ? Do you need physical help in order to move ? Do you need help getting into and pushing a wheelchair ?

Do you experience body pain ? Muscle fatigue ? Muscle dysfunction ? Inability to stand without support ?

Are you bed-bound for large portions of the day ? Do you have restricted mobility ? Do you experience pain anddiscomfort ?


Q. 32 Do you fall or stumble outdoors ?

Do you experience body spasms, paralysis, numbness, shaking ?

Do you fall without warning ? Do your muscles just stop working all of a sudden ?

Are your muscles able to hold you up ?

Do you black- out upon standing ?

Can you bear physical contact ? Do you suffer from pins and needles, flowing and moving sensations ? Do your hands, feet and legs go dead ?

What degree of physical pain are you in ?

Do you have poor spacial awareness ? Do you bump into things ?


What happens when you fall ?

If you fall do you have the energy to deal with it ? Do you need help from another person ? What impact does falling have upon your symptoms, does it make them worse ?


Section 4 Q 39 : Help to get into bed :

Do you need someone to warm the bed for you, because of temperature regulation issues ? Does someone have to pull back the covers for you ? Do you require assistance with a drink ?

Help to get out of bed :

Are you paralysed after sleep ? Are you in pain ? Can you move your limbs ? Can you open your eyes or speak ? Do you require gentle help to move your limbs; can you bear their touch though ?

Are you in danger of falling ? Do you need to be helped into a wheelchair ? Can you cope with the movement ?

Do you have to return to bed throughout the day and need regular assistance ? Do you need help to get out of bed and go to the toilet ?


Toilet needs :

Do you suffer from IBS type symptoms ? Do you have increased micturation or diarrhoea , which means you have to use the toilet more frequently ?

Do you need help with getting to the toilet, help with clothing ?

Have you had any special adaptations made to your toilet ?


Washing, bathing :

Are you able to stand or do you require help ? Can you judge temperature accurately or are you too numb, or do you suffer from pins and needles ? Do you experience exhaustion and muscle dysfunction ?

Do you require assistance in and out of the bath ?

Are your hands strong enough to use grab rails, if they have been provided ?

Do you need to use a wheelchair to get to the bathroom ?

Q42 . Dressing and undressing :

Does someone have to wash and iron your clothes ? Do you need help to pull things over your head ? Do you have to wear special, comfortable clothing ? Does dressing take a long time because of pain, exhaustion ?

Can you put your shoes on, tie laces ? Can you cope with buttons – are you able to use your fingers or are they too numb, painful, paralysed ?

Q 43 Moving about indoors :


Do you have to sleep downstairs ?

Are you severely disabled with exhaustion, muscle fatigue, parathesia, numbness, transient paralysis, pain and other symptoms ?

Do you have breathing difficulties ? Are you in danger of falling ? Do you get breathless ? Do you experience secondary hyperventilation as a result of muscle dysfunction ?

Do you experience muscle weakness, muscle spasms, do you require assistance with walking ?

Do you suffer from dizziness, pain, disorientation, malaise ?

Q 44 Do you fall or stumble indoors ?

Do you suffer from pain, poor spacial awareness , balance and coordination difficulties, weak painful muscles, muscle fatigue, exhaustion, dizziness, orthostatic intolerance, transient paralysis and numbness, affecting both awareness and cognitive function, , eye pain or facial paralysis ?


Q 45 Difficulties with food and drink :

Do you need to be fed ? Are you able to remove caps, add seasoning ? Can you sit up ?

Do you need your food preparing and chopping. Do you have to use special cutlery ? Do you have the strength to cut your food , lift a knife and fork ? Do you suffer from muscle dysfunction and an extreme lack of energy.

Do your hands work ? Do you experience paralysis, numbness, parathesia , pain ? Do you require assistance to drink throughout the day ? Can you hold a cup or glass Do you need someone to fetch and hold your drink ?

Does your food have to be cut up for you ? Do you have difficulties with chewing, swallowing ? Do you become exhausted and experience Post exertional fatigue and malaise ? Do you become ill and exhausted following meals ?

Do you have difficulties sitting upright ?

Do you need reminding to eat meals regularly ? Do you need to eat frequently to avoid hypoglycaemia ?

Q 46 Medication during the day :

Do you suffer from cognitive difficulties and mental tiredness ? Do you need frequent help to remember to take your medication ?

Do you need help to open pots, take out pills, help with a drink, then to swallow ? Do you need help to sit upright in order to take your medication ?

Do you need help to cut pills ? Do you need someone to fetch your medication from the pharmacy ?

Are you sensitive to drugs Do you need help coping with the side effects of medication ?


Does your GP have to visit you at home ? Do cognitive difficulties,(receiving and processing of information), paralysis make it difficult for you to speak ? Does someone have to speak on your behalf ?

Do you have any regular tests which need carrying out at home ? Do you need someone to open the door and let the nurse or doctor in ? Do you need someone to comfort and support you ? Do you experience post-exertional malaise ?

Q 47 Communication :

Do you have difficulty with receiving and processing

information ? Do you have concentration and memory difficulties and difficulties in thinking ? Do you experience mental fatigue and brain fog ?

Do you suffer from hyperacusis ? Can you listen and speak to people on the phone ? Can you listen to or converse with people on a 1:1 basis ?

Are you able to physically hold the phone ? Do you have the breath to speak or do you become breathless when youspeak ? Do you have the energy to engage in ongoing conversation with others ?

Are you light sensitive ? Do you need low lighting and a darkened room ? Can you read ? Can you understand and make sense of questions, forms, letters ? Do you need help to read your post, deal with bills, application forms ?

Do you need someone to answer the telephone, answer the door, make telephone calls for you, speak on your behalf ?

Do your symptoms increase during and following any exertion ?

Are you able to hold a pen Do you suffer from pain, paralysis, numbness, poor motor control and coordination, muscle fatigue and lack of energy and ability, because of your severe ME ?

Q 48 Help with hobbies, interests and social activities : at home, continued :

Do you need someone to fetch and carry anything you need, write letters for you ?

Do you need someone to read the post for you, read articles to you, type emails for you, manage the complexity of a computer for you ?

Do you need someone to mow the lawn and do the garden for you ?

Are you too physically exhausted, weak and unable to manage by yourself ?

Can you sustain normal function or interaction ?

When you go out :

Do you need someone to help you get your outdoor clothing and shoes, help you in and out of your wheelchair ?

Do you need help to cope with your symptoms ?

Do you need someone to drive you, to push your wheelchair, help you cope with the environment, get you to a toilet, make sure that you have food and that you are safe ?

Do you lead a very restricted and isolated life at home ? Are you unable to go to most places because of your symptoms ? Can you have a normal social or leisure life ?

Do you need someone to attend meetings on your behalf and represent you ?

Do you need someone to go and get cash out from a bank for you ?

Q 49 Supervision from another person :

Do you need someone around at all times because you are in danger of falling or hurting yourselt ?

For large parts of the day are you completely immobile ? Are you in constant and severe pain ? Do you need someone to help you with all aspects of your life ? Do you need someone always available to help you within calling distance ?

Q 50 Preparing & Cooking a Meal :

Do you have cognitive difficulties with receiving and processing information ? Does this makes thinking and planning difficult ?

Do you have brain fog ? Do you have difficulty thinking, remembering , receiving and processing information ? Do you forget the names of objects and words ?

Do you have difficulty standing and sitting? Can you tell temperature safely ? Are you at risk of burning yourself, near a hot plate, oven or grill or hot water ?

Are you noise sensitive ? Do you get irritated by the sound of running water, the sound of rattling cutlery, the banging of pots, pans and plates ?

Do you experience chemical sensitivities ? Do certain foods and ingredients can make you nauseous , give you a headache or make you ill ?

Do you have difficulties carrying , holding and lifting pans, pots cutlery, kettle ?

Do you have poor spacial awareness, orthostatic intolerance? Do you get dizzy , black out , fall over ?

Are you able to read ingredients and tell weights ? Do you have the strength or energy to chop ? Does any activity make you more ill, with increased pain, for hours or days afterwards ?


Q 51 Help with care needs during the night :


Do you need help to move limbs and body ?

Do you bad nightmares, linked to the severity of yourSymptoms ?

Do you need reassurance and emotional support ?

Do you find it difficult to go to the sleep ?

Is your experience of sleep unrefreshing ?

Do you need help to cope with your symptoms ?

Do you need help to get a drink ?

Do you need help moving the duvets on and off ? Do you experience night time shivering and sweats, because of poor temperature regulation ?

Do you have difficulty getting physically comfortable because of your symptoms ?


Q 52 Help with toilet needs during the night- continued.



Following any period of sleep, do you become unable to move without physical assistance ?


Do you need help to move your body, to sit up, to get to the toilet, to open and shut the door and sit on the toilet ?



Would it be inappropriate for you to use a commode ? Would it be physically comfortable or unsafe for you ?


Do you have increased micturition because of your severe ME ?


The longer and deeper you sleep , do your symptoms get worse ?


Q 53 Help with medication at night :


Are you unable to move following sleep ? Do you need help to take the medicine ?


Do you experience painful hands, muscle dysfunction, numbness and paralysis ? .


Do you need physical contact and comfort for your symptoms ?


Q54 Do you need someone to watch over you – further information:

Would being left alone at night be dangerous for you ? Can you get out of bed, or out of the house, without physical help from another person ?

Do you need physical and emotional support to cope ? Do you experience insomnia ? Do you have difficulties getting to sleep ?

Do you need someone around at all times because you have exhaustion, muscle fatigue, transient paralysis, cognitive dysfunction, dizziness and post exertional malaise ?

Are you in constant danger of hurting yourself and not getting your needs met and a subsequent worsening of symptoms, without someone available at all times ?

Do you need someone to be with you, to help you to get to the toilet during the night ?

Q55 Anything else you want to tell us :

There is so much you can potentially add here - especially a full description of your symptoms, here are some ideas for you :

Are you severely ill and disabled ?

Do you ever feel well ?

Without ongoing assistance, day and night, would you get your basic needs met ?

Can you predict or determine how you will be in any one moment ?

WHAT ARE YOUR SYMPTOMS ?

Weakness, transient paralysis and sleep paralsysis ?

Noise sensitivity (hyperacusis) and light sensitivity (photophobia) ?

Widespread disturbance of the central nervous system : parathesia, crawling, itching, burning sensations, pins and needles and numbness ?

Cognitive disturbance including difficulties with receiving and processing information, difficulties with short-tern memory, concentration and spacial discrimination ?

Head pain and migraine type headaches ?

Following sleep do you become totally paralysed and unable to move or even speak, without assistance ?

Do you experience hyperesthesia , is your body hypersensitive and painful ?

Is the process of helping you long and slow ?

Does anything you do have a potential after-affect that can put you in bed for hours or days or weeks at a time ?

Are you always in pain ? Can you ever get comfortable ?

Do your muscles give way without notice ?

Do you need care day and night and assistance with all areas of your life; physical, emotional and spiritual ?

Does contact from other people have a post- exertional impact resulting in worsening symptoms and increased pain and fatigue ?

HAVE YOU HAD ANY RECENT TESTS CARRIED OUT ?

Do you have difficulties with concentrating , receiving information, understanding questions, thinking and processing information ?

Do you experience neurological symptoms such as paralysis (both transient awake and sleep-induced), spasms (ranging from head and arm shaking to full body spasms), facial palsy/swallowing difficulties , numbness ?

Do you experience muscle dysfunction, leading to recurrent immobility and falls, an inability to hold things ?


Orthostatic intolerance :do yo u black out on standing up and go dizzy ?


Parasthesia and hyperesthesia : resulting in physical contact being unbearable, along with flowing and moving sensations all over your body like very fine tingling/pins and needles. Do your hands, arms, legs and feet go completely dead and numb ?

Pain : do you have severe and often acute levels of pain ?

Are you ever out of pain ? Is it burning, itching, throbbing pain ? Does activity bring increased pain ?

Flu-like symptoms and malaise : meaning you never feel well ? Does this worsen with any activity, mental or physical ?

Severe head-pain and headaches.

IBS type symptoms, nausea, food sensitivities, causing you difficulties with diet and eating ? Do you need a special diet ?

Hypoglycaemia : Do you need constant help to eat enough food regularly to try and avoid this ?

Sleep dysfunction : do you have difficulties in getting to
sleep, difficulty going to sleep until the early hours of the morning,
becoming paralysed with intensified pain, resulting in inability to speak or open mouth or eyes or move any part of you ?

Do you lose sense of parts of your body such as your head and mouth , hands and arms and feet ( proprioception) ? Are you unable to speak ?


Is your sleep pattern shifted ?

Increased micturition. Also dry mouth and increased thirst, do you have to drink more often which has an impact especially at night ?


Eye pain, visual disturbances, difficulties with movement and motion ? Do your eye muscles hold their focus ?Do you experience pain when attempting to read and
double-letter vision ? Do your eyes itch and burn ?

Cognitive dysfunction : leading to immense difficulties in receiving and processing information, which causes huge problems in communicating both face to face with people and other forms such as reading and writing and telephone ?

This is a major documented symptom of ME.

Photophobia : does light hurt you ? Do you have to have the curtains pulled, low lighting at best ?

Acute noise sensitivity. Does this lead to problems with interacting with people ?

Heat and cold intolerance – do heat and cold both make you feel more ill ? Temperature regulation – do you often feel too cold or get too hot sometimes.

Post exertional malaise/fatigue – do you run out of energy and feel even more ill with exacerbated symptoms after even small activity or movement ?

Muscle fatiguability leading to complete inability to use muscles with no energy and immensely increased pain and numbness. Does this result in falls, and dropping things ?

Chemical and drug sensitivity – have you developed heightened awareness to chemical and odours leading me to feel nauseous, headache and have to return to lying down due to pain and increased malaise.

Do drugs cause a bad reaction in you ?

Extreme pallor, is your skin sallow ?

Breathing difficulties does your diaphragm ache and struggles with breathing? Do you get breathless quickly ?


Mobility – can you move at all, due to paralysis, numbness, parasthesia and pain Do you have difficulties standing for long due to muscle dysfunction, orthostatic intolerance etc ? Does bending over makes you dizzy ? Do you bump into things ? Do you trip over things ? Do you fall regularly ? Do you find it uncomfortable often to be upright ? Do you find motion and bumps and vibrations and people difficult to tolerate because of your complex symptoms ?

Any Further symptoms
that may be linked to your ME or be separate but impacting on it ?

You got here – well done !! Good luck .


Greg Crowhurst 2009



CBT & GET in ME : a Boundary Issue

Cognitive Behaviour Therapy and Graded Exercise Therapy in

ME : a boundary issue .


Greg Crowhurst

29 October 2009
(may be reposted)

"I could see the sense in graded exercise and how it could help someone to comeback from an illness and aid in their recovery but unfortunately with ME this treatment does not work and just sets you back. " (Person with severe ME)


"Giving GET and CBT to people with ME is like trying to prescribe treatment without first investigating the disease – madness ! We need proper biomedical research to find out the cause(s) of this illness and to investigate fully what it does to the body.. GET and CBT have been found to be at best unhelpful to those with ME at worse, harmful." (Person with severe ME)


"Having been a career in professional management, (before forced to give up work through ill health), as part of management development, I touched on CBT within the psychology of training so knew a little about its application/benefit. Not a cynic, I felt I was sufficiently self aware however to recognise that CBT was not the answer to the "very physical" symptoms with which I battle as part of M.E. and felt it was not the best form of treatment for me. (Person with severe ME)

"I have not been offered CBT. My GP doesn't believe it will make any difference as I have no "faulty illness beliefs", am well motivated, and have adjusted my life to working within my (very limited) energy levels. "(Person with severe ME)


All quotes are from (Crowhurst G 2005) 25% Group Submission to the Gibson Inquiry http://www.25megroup.org/Campaigning/Gibson%20Inquiry.htm

Introduction :

CBT and GET are constantly prescribed as universal treatments for ME, however they are not universal treatments, they may be treatments for CF and they may be appropriate rehabilitative techniques or tools to aid individual people to cope with chronic illness , however they can never be considered a treatment for ME and all the time they are, they act as smokescreen to delay and avoid awareness of the real issue, the need for genuine treatment based on biomedical fact and biomedical research.


The use of CBT and GET as 'treatments' for ME are enabled because ME has been subtly and cleverly downgraded by introducing the term "CFS" as synonymous with ME. This is the beginning of the Great Lie that leads away from genuine testing, treatment and prognosis of this devastating illness towards the persecution and denial of extremely ill, severely disabled people , who may die as a result of this disease.


The true reality of the nature of ME is denied by choosing to neglect the boundary separation issue between Chronic Fatigue Syndrome (CFS), which encompasses a whole host of disparate fatigue-related, possible mental health conditions and Myalgic Encephalomyelitis (ME), a specific World Health Organization recognized neurological disease.


Under the ongoing influence of powerful vested interests , ME has become inextricably tangled with Chronic Fatigue Syndrome to such an extent that truth seems false and genuine need is misinterpreted as intentional dependency :


The true number of symptoms in ME is constantly denied or ignored.



· The physical tortuous reality of neurological ME is constantly denied, diminished, negated and ultimately neglected .



· People are constantly not treated fairly , with equality. Because their true reality is denied, their equality is denied right across the board and they are disempowered. They do not have an equal voice , they are not considered equally valid in what they have to say and their complaints and demands for fair treatment are twisted and made into "deviance" and "non-compliance".



Equating ME with CFS , imposes wrong interpretations upon the ME sufferer's symptoms , life experience and needs. If you accept that the person with CFS who can or may get better from CBT and GET is the same as the person with neurological ME who cannot, it is easy to assume that the person with ME is :



· not trying hard enough;

· is malingering;

· wants to be ill;

· is a burden on society and deserves to be persecuted and exposed to extreme and often hostile red tape and procedures, which undermine the genuine need for benefits, medical treatment, biomedical consultancy, understanding and compassion.



The argument that both CBT and GET are simply not being done properly by the host of ME sufferers who have tried it and been damaged by it, is, disturbingly, being used to advocate greater training of therapists and greater therapeutic input, by some of the biggest ME Charities, a persuasive stance perhaps; but a stance which is starkly at odds with its own ME membership : people with ME, over and over again, in surveys say they do not want CBT or GET. There is no evidence that CBT and GET works in ME (as opposed to "CFS") and there is no valid justification for NICE to advocate them so strongly.



Powerful vested interests, however, have much to gain.


In theory, according to the NICE guidelines currently being challenged through Judicial Review, patients can "choose" whether or not to participate or not in a CBT/GET programme , however it should never be left up to very ill patients, who may have severe cognitive difficulties and other severe symptoms , to have to refuse what is wrongly deemed as "treatment".



ME sufferers may not have the cognitive ability to explain their reasoning or the physical and emotional energy to stand up for themselves.


The reasons why it is so dangerous to offer these rehabilitative techniques to patients with ME is precisely because they are not being treated as aids to recovery but solutions to a problem and treatment in themselves.


They also imply a false assumption that you can , will and should get well / better , if only you follow the regime; yet as the Chief Medical Officer (2002) stated , anyone severely affected for more than 5 years has a poor prognosis of recovery .


The only way that anyone could possibly accept that CBT and GET are suitable treatments for ME is :



· by neglecting to separate CFS from ME

· by omitting or denying the true physical nature of ME

· by diminishing the biomedical need of the person with ME.



The deciding moment



Choosing to accept that CBT and GET are a treatment for ME is a definitive choice, for it is to adopt a posture that could easily end up persecuting and victimizing this already marginalized and denied group of people. It is to accept the inappropriate psychiatric paradigm; whether intentionally, through unawareness , or by default.


Particularly vulnerable are those new to the illness who are given a CFS label and do not even know if they have ME or not and are therefore exposed to these psychosocial treatments, whether appropriate or not. Desperate to get better they may try them and place themselves at great risk of deterioration.


Thousands around the world, newly ill with ME, may not understand the dangers of following a CBT/GET pathway and will be more likely to trust and accept it is appropriate without questioning.



The continued offering of Cognitive Behavioural Therapy and Graded Exercise Treatment as frontline treatments for people with ME has to be stopped, and the toxic "CFS" label must be dropped once and for all from "ME" !



The experience of Severe ME sufferers who have experienced CBT and GET :
Taken from both the EAME/25% Group Norfolk/Survey (Crowhurst & Crowhurst 2007 (www.metrainingco.org.uk ) and the Gibson Survey for 25% Group (Crowhurst 2005 (http://www.25megroup.org/Campaigning/Gibson%20Inquiry.htm)



these are the voices and experiences of those who best know the awful truth about CBT and GET :



o My GP gave me a leaflet his practice had received from Simon Wessley's unit at Kings College Hospital in London. I read it and said that the condition it described had no similarities to what I was experiencing. He suggested I go for an initial assessment anyway which I did – at great cost to my health. On arrival I was horrified to find that the 'CFS' unit was in the psychiatric department KCH and at that time, security doors protected it. I was also concerned that I was attending a 'CFS' unit since this label did not describe my complaint. It came as a shock to be seen by a psychiatrist who displayed little or no understanding of what I told him. My symptoms, most of which are included in the Canadian Criteria, were dismissed or ignored. At the end of the consultation he suggested a course of CBT and said I should take up exercise and get some hobbies. Six months later I was called for a course of CBT which I declined. The therapist became aggressive and defensive when I explained why.



o I was an in-patient in a psychiatric ward of a London hospital. I was the only patient who did not have a mental health problem, and although my CBT therapist had had plenty of experience of working with M.E. patients, I was the first to be admitted as an in-patient. I received both CBT and GET, but the graded exercise seemed to be given priority. I worked with a physiotherapist, who also had no experience of M.E. I began to seriously deteriorate, and 4 months in, suffered a major relapse. I had a kind of undiagnosed 'stroke', collapsed, and became incapable of looking after myself. When I went to the hospital I could walk 100 yd., feed, wash and dress myself. When I left I could not weight bear at all, had no leg muscles to speak of, and needed two people to transfer me on and off the toilet and in and out of bed. I had little use of my hands and was totally bed bound. I could not tolerate sitting upright against the pillows, conversation was beyond me, and I could barely manage to feed myself by picking up food in my hands -- cutlery was out of the question. Nine years later I have improved, but I'm still bed bound.



o It ruins lives. If you do not respond to CBT and Graded Activity you are given up on. The medical profession, and lay persons, think that ME is just pain and fatigue and we are all depressed, even in the face of evidence to the contrary. The only treatments offered aim to correct these symptoms, and any other symptoms are classed as psychosomatic. Because of this serious, debilitating and potentially life threatening symptoms are left untreated causing unnecessary suffering.



o If you do not respond to Graded Activity, the Benefits Agency seem to think you are either malingering or depressed and benefits are refused. The Agency, and in particular their Medical Examiners, seem oblivious to the problems and symptoms of severe ME and all seem under the impression that everyone with ME recovers in under 5 years. If you are still ill after that it either isn't ME or you are mentally or behaviourally ill in some way.



o after I came home from the hospital where I received CBT/GET therapy, a physio came to see me once a week. The first one was absolutely appalling, and used to drag me up off the bed and hold me upright, even though I was too ill to cope with this, and my body was collapsing under me. It was a 'fight' really, with her believing that if I wasn't allowed to sit down, the muscles in my legs would improve, and I would gradually begin to weight-bear



o "We wish of course that we could recover from the illness, and resume a normal life, with a little graded exercise/activity and a positive mindset. It would be the perfect solution without having to resort to drugs and the risk of side effects. But it simply doesn't work for those correctly diagnosed with ME and in some cases can actually make matters even worse"



o "CBT in particular is understandably appealing to the DoH as it's an apparently cheap option to deal with an expensive problem. But it appears to be a red herring dressed up as a cure by those who seek to deny the physical reality of the illness",



o I participated in Graded Exercise therapy via the 'National M.E Centre', Romford, Essex.This lead to a relapse, at home, and made me unable to sit upright for 1 year due to pressure in my head, and chest pain. I then relapsed and ended up in my local NHS Hospital in a cardiac care unit.



o Graded Exercise Therapy worsened me dramatically and I have no doubt had been a large factor in my being severely affected after 20 years. Cognitive Behavioural Therapy - this did not make me worse but I feel was completely inappropriate and didn't have any relevance to my day to day life.



o "I've had CBT and GET. Both of these made me extremely worse for a number of years and from which I am still recovering from and which has still affected me."



o Have had CBT before I moved here and the exertion, traveling and questioning was exhausting and made me worse.


o "Common sense helps with pacing and graded exercise etc. CBT and GET I don't think are helpful, as often any course is very draining and I cannot concentrate anyway



o ME and CFS should be considered as separate illnesses when treatments are being considered. For example, I am sure there are instances where graded exercise could be very helpful in CFS whereas I know, as a severe ME sufferer, that in my case it would do far more harm than good



o Graded exercise don't work.



o Please research severe ME (bedridden patients) and please stop putting money into psychological interventions (CBT, Activity Programs, Behavioural Models) – research the physical aspects of the disease, it's cause, management and treatment instead.

Conclusion :

If we are not listening to the voice of the ME sufferer, then who are we listening to ?


Who is benefiting?


Certainly not the very ill people who have the serious neurological chronic disease: Myalgic Encephalomyelitis.

Greg Crowhurst : Spinning the web

If anyone looks up my name on a search engine,one of the first listings they come across is an article called "Greg Crowhurst : Spinning the Web" - a defamatory piece.

I was besieged by requests from the mainstream ME community to ignore the article when it came out - for it could very well have sabotaged the Judicial Review at the time.

I was not that bothered anyway. Being wronged seems to be par for the course, for anyone who is brave enough to take a stand . I am proud to stand along side giants like Malcom Hooper, Margaret Williams, Kevin Short; all of us have suffered similar attacks, in fact mine is nothing compared to the abuse that has been directed at them from ME "activists ".


However the wider world may not understand . The article greatly bothers my wife (for it also attacks her) and is of no help when I submit serious articles to the Nursing Press or indeed try and get my book published.

Thinking laterally , I have come across this incredibly appropriate Ethiopian Quote :
“When spider webs unite, they can tie up a lion” - how wonderful !

I love that analogy...

.so much that I have today changed the title of this blog. (...hopefully all these entries will relegate that defamatory article, in time, to a much more obscure page.)

By the way, here is the video that has so upset parts of the ME Community :

A Biopsychosocial Recipe

Take on real, severely disabling and chronic
physical illness,
And piece by piece destroy everything
That defines it.
Change its name
Downgrade its symptoms
Minimize the criteria to identify it
Use rehabilitative techniques as first-line treatments
And blame us when we fail to get better
Deny the physical reality of it
Provide limited and incorrect information
To Government departments, the Benefit Agencies, the Health Service,
About the true nature and serious epidemic propensity of the disease
Ignore any physical research
That disprove the lies
Misuse money meant for accurate assessment and treatment
Focus on one single criteria - fatigue-
That is not even an essential symptom of the disease
Sentence thousands of people
To live their lives hidden away
Suffering daily
Hounded by Benefit Agencies
Denied by Insurance Companies
Ridiculed and derided by the public
Misunderstood by family, friends
And even doctors and nurses
Living in poverty
On the edge of existence
What is the outcome ?
Chronic Fatigue Syndrome and a Biopsychosocial model of "care".

Tastes disgusting, doesn't it ?

Linda Crowhurst

ad infinitum

The throbbing pain continues
ad infinitum
so too my limitation continues
ad infinitum
Today I cannot bear it
This moment
This time,
It is too much to bear
too much to endure
too much to believe
that it has been here
continuously day in, day out
for 15 years
How can a body burn in pain
so continuously
without anyone official doing anything about it ?
without anyone looking to find out what is wrong ?
without anyone offering hope that it will change ?
And how can the psychiatric lobby get away with stealing the name ME
and making it into a disparate, vague, chronic fatigue syndrome ?
With stealing a disease and creating a condition ?
With stealing 64 symptoms and covering them up with 6 ?
With stealing the funding for ME ?
And using it to create their own fatigue clinics
that don't actually treat any neurological symptoms.
With stealing the truth that ME is a neurological illness
And creating a myth that it is all in the mind ?
With stealing our right to be taken seriously and creating a dangerous
situation
where other pofessionals don't understand or believe us ?
With stealing the foreground and putting out untrue statements
that we don't need physical research ?
Basically stealing every precious moment in my life
by allowing this travesty of a medical service to provide nothing for me
and allow me to carry on throbbing and throbbing and throbbing
ad infinitum
with no treatment, no cure, no proper definition, no proper name, no
physical research, no hope, no truth !

Evil ?

And what is wicked if not the deliberate
abuse of a vulnerable person ?
What is evil if not the deliberate and intentional denial and destruction of a real physical neurological disease
and replacing it with myths, limited assessment and potentially abusive
therapies
and the lie that you will get better ?

Just tell me how I will get better
with everything being syphoned off from neurological ME
and being channeled into the coffers of the psychiatric lobby
and the insurance lobby ?

Linda Crowhurst

"Somatisation" rules OK ..?

"The years during which thousands of research papers and media articles were written, and much research money wasted, purporting to explain away a life-destroying neurological disease with discussions of faulty illness beliefs, stress, school phobia, personality disorders, miracle cures etc. must now be consigned to the pile of faulty research which has so dominated Medical Research Council research policy toward ME.

STATEMENT by INVEST in ME WPI RESEARCHERS DISCOVER RETROVIRAL LINK TO CHRONIC FATIGUE SYNDROME http://www.investinme.org/Article-325%20WPI%20Statement%20October%202009.htm

"Chronic fatigue syndrome" is over, except maybe in Witchita, in Macon County, Ga. and in Bill Reeves' head.

History is shifting. The pundits, the people who are paid to ask why, will finally ask the questions they should have asked twenty-five years ago: why medicine is so obtuse, its practitioners so willfully ignorant. How could our government and the governments of other nations dismiss and then ignore millions who suffered from “An infectious disease of the brain,” as Hilary Koprowski of the Wistar Institute called it publicly in 1992. Koprowski was an expert in neurological diseases—he knew one when he saw one.

Word spreads fast these days and secrets are hard to keep, especially secrets as fascinating as this one.
Science was forced to move up their publication date, originally set for October 16th, due to the rumors and gossip on Internet chatrooms, blogs and websites that began two weeks ago. The news was spreading virally, if you will. With over a million Americans sick, this news was never going to be secret for long.

Let’s make sure this horrific chapter in medical history is not forgotten. The years of our lives during which thousands of research papers were written by psychiatrists or wanna-be psychiatrists purporting to explain away a life-destroying disease with discussions of personality disorders, exercise and activity phobia, malingering, hysteria, stress, sexual abuse, school phobia, Type A behavior, attention-seeking behavior, and any other kind of behavior, must be respected, the papers saved for posterity. Princeton English professor Elaine Showalter’s book equating this disease with fantasies of alien abduction probably deserves its own shelf in this pantheon of the grotesque. And, rest in peace—if you can—Stephen Straus, father of the movement. All these works will be examined, in time, by researchers who seek to understand the human capacity for delusion, ignorance and greed.

Sometimes, music is enough."

Hilary Johnson

http://oslersweb.com/blog.htm?post=638469


...You would think so wouldn't you ? However you just hve to read Wallace Sampson's unbelievable article to seee how deeply ingrained the medical prejudice towards ME sufferers still is ; here is an extract :

"CFS : Viral vs somatization by Wallace Sampsonhttp://www.sciencebasedmedicine.org/?p=2096

"....... A signal finding of CFS people is a solidified lack of insight, and resistance to introspection and to pursuing psychotherapy or psychological investigation. Psychotropic drugs are generally unable to produce relief or a sense of help. This characteristic has made a diagnosis of underlying depression uncertain, and psychological approaches unsuccessful. But the lack of insight and the surface hostility to medical approaches cause a standoff between the affected and the medical system. Affected people drift easily into aberrant sectarian systems and methods, often claiming dramatic, though temporary results from them. Although most psychological approaches meet with resistance, some success is reported with cognitive behavioral therapy, perceived as non-threatening.

CFS uniformly spontaneously resolves over time. According to CDC, almost all cases are resolved by three years, although there are many of longer record. If anyone has ever died with CFS, I’ve not heard of it. Nor have there been complications or sequelae....."

..... two names on the (XMRV) news releases and the report caught my eye. The major research organization publicizing the discovery was the Whittemore-Peterson Institute for Molecular Biology. Reno is not far from Incline Village and the name D. Peterson – that turned out to be Daniel Peterson, the second physician in the original Incline report, along with Paul Cheney. Over twenty years of searching for a cause of a phenomenon (an infectious epidemic) determined not to have occurred – and the search continues? I could not help but take notice. And who is Whittemore? He is a real estate developer in Reno who supplied the first $1.4 million for the new research institute to be at the University of Nevada Reno’s medical school, to be devoted to investigating neuro-humoral systems. I suspected some family connection to CFS so looked through the releases and found a note that his daughter, 26, is…a sufferer from CFS. None of this detracts directly from the weight of the experimental findings, but it’s just unsettling."

A response by MalcolmHooperon 15 Oct 2009 to Sampson :

The term CFS is not 100 years old it was introduced in 1988 against the wishes of the sick patients and some physicians who were treating people with ME, myalgic encephalomyelitis. Somatisation transfers the responsiblity for the disease to the patient and excludes him/her from any serious consideration of their illness. Somatisation has a long and much discredited history since it offered ‘explanations’ of illnesses like diabetes, Parkinson’s disease and multiple sclerosis before the physiological bases of these illnesses were identified. Somatisation is the last resort for those who will not think more deeply and collect data to help understand an illness. It gets difficult patients off the physicians list and reduces the need for any engagement with them.
The term ME has been included in the WHO international classification of diseases, ICD-10, since 1969 under neurological illnesses chapter G 93.3. ME identifies muscle pain with inflammation of the brain and spinal cord and is a clear and meaningful clinical definition. The recent Canadian Consensus fills out this definition with an abundance of clinical signs to help any compassionate physician engage with this illness. Please reada and use it.
Over 50 years of dedicated research by Dr John Richardson provides very strong evidence for an enteroviral related illness that is confirmed by the recent studies of Dr John Chia. There is compelling evidence that other rviruses may play a part partcularly those of the herpes family. Some 4000 papers addressing the biological basis of ME have provided definitive biological evidence for this complex chronic multi-system illness.


Please read them and do not belittle sick patients by the use of terms like somatisation.

Years fly by

Years fly by

I am bewildered by time
Confused by its passing
Apparently slow
Unendingly similar
Yet years fly by
and here I am ageing
whilst apparently
doing
nothing
of consequence
The past becomes an empty
egg shaped space
full only of golden light
and silent loving
The present-ever-glowing
The future unthought of
and unplanned for
in the impossibility of now
the endless inability
spilling over
down the decades
Life becomes lived
despite its somehow
lifeless quality
I find it all so very bizarre
Trapped in the quandary
of this illness.

Linda Crowhurst
18th October 2009

Now we can get down to business : reactions to XMRV

Now we can get down to business...
Some international reactions to XMRV and ME


Greg Crowhurst Oct 19 2009
(may be reposted)


"It's a Brave New World for Chronic Fatigue Syndrome" Paul Cheney, MD

XMRV - the findings :

Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases. Our work suggests, but does not prove, that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.

A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with ME/CFS have been given the diagnosis of fibromyalgia when in fact they have ME/CFS and fibromyalgia.

Whittemore Peterson Institute http://www.wpinstitute.org/xmrv/xmrv_qa.html

These are clearly important research findings that could help with both the diagnosis and management of ME/CFS, and we congratulate all those involved.

ME Association

http://www.meassociation.org.uk/content/view/1042/161/


XMRV : a demarcating point in the history of this illness.

The discovery of the XMRV retrovirus in most chronic fatigue syndrome (ME/CFS) patients appeaXMRV in chronic fatigue syndromers to be a demarcating point in the history of this illness. The publication of the study in Science, the most prestigious scientific journal in the world, by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the Whittemore Peterson Institute prompted a flood of stories across the major media outlets and scientific publications including Nature, Scientific American, the New York Times, (two articles), NPR, Fox News, LA Times, etc.

Amid concerns that the blood supply was contaminated the NIH officials announced they'd already held a conference on the issue. The Whittemore Peterson Institute rapidly conferred a new name for what it believes are a cadre of XMRV diseases - XAND (X Associated Neuroimmune Disease).

Phoenix Rising http://aboutmecfs.org/Rsrch/XMRVIntro.aspx

XMRV : the observations fit

What has caught the attention of the scientific world is that these observations seem to fit neatly, at least at a first glance, with what is already known about ME/CFS as a chronic illness. For example, viruses related to XMRV have been reported to be involved in damage to blood vessels and nerves, and natural killer cells (historically low in ME/CFS) are said to be susceptible to infection by XMRV. Also, the fact that retroviruses like XMRV are known to be able to activate some other (latent) viruses might explain why ME/CFS has been associated with a range of different viral triggers, such as herpesviruses like Epstein-Barr, over the years. Again, as Dr Judy Mikovits and colleagues point out in their paper, some of the most commonly reported features of ME/CFS include neurological symptoms and immune dysfunction with inflammatory cytokine and chemokine upregulation, and some of these observations could be accounted for by infectious XMRV in lymphocytes. The fact that such pieces seem to fit so well together is suggestive only at this stage, however, and a virologist at Tufts University was surely wise to say in New Scientist that while it’s not impossible that infection with this agent might cause a disease with neurological and immunological consequences, we don’t know for sure as yet.

ME Research UK

http://www.meresearch.org.uk/information/publications/xmrvfind.html


XMRV : Holy smokes!

Holy Smokes. Just when I want to retire this comes along. How am I going to get any peace and quiet? ….For many years ME/CFS has been limping along on complex science that points to mechanisms of illness that most physicians have ignored. Limped along with skeptical specialists, medical establishments, government agencies. Limped along despite attacks by disability companies. Now we can get down to business.....I would think of XMRV as the "puppet-master". It is known to be linked to prostate cancer; it lurks in the shadows and pulls certain strings causing cells to become malignant. Perhaps it pulls another string to cause EBV to be more active, or Lyme, or enterovirus? Another string to alter RNAse L? Many, many questions open up.

Dr David Bell http://www.davidsbell.com/PrintLynNewsV6N2.htm


XMRV : A game changing scientific event

The announcement on October 8, 2009, that an infectious retrovirus called XMRV (xenotropic murine-related retrovirus) was linked to CFS, could be the game-changing scientific event we have been waiting for. Whether XMRV provides the long-awaited causal link will depend on the findings described in the Science paper being replicated by another laboratory in another group of CFS patients.

Suzzane Vernon Scientific Director The CIFDS Association of America

http://www.cfids.org/cfidslink/2009/110402.asp


XMRV : a swell of jubilation

In the ME/CFS community, since yesterday, there has been a swell of jubilation. This may seem odd to a lot of people considering that researchers just found something in our blood similar to HIV. None of us are shocked by this news because we've always known we had something like HIV, something serious and deadly, but we have had to face a surreal social gaslighting while simultaneously weathering the horror of a terrible, life-destroying illness. Dr. Mark Loveless once said that an ME/CFS patient feels every day significantly the same as an AIDS patient feels two months before death. Now that statement holds more weight: ME is to AIDS what vegetative is to death.

The discovery of a new retrovirus called XMRV in ME patients is the biggest news in the history of the ME epidemic (and yes, I'm fully claiming the term ME now, as all "CFS" patients can do, now that as Hilary Johnson says "Our Vietnam War Ended Today" and we can strip the shackles of this government's attempts to squelch, misname, deny, and otherwise ignore our epidemic). News of the ME/XMRV connection has spread around the world like wildfire. Stories have appeared in just about every major media outlet. ME/CFS lists are buzzing. Patients who have written about our lives, screamed about these horrors, fought for medical attention, and died due to medical and social and governmental ignorance and suppression now have our day.

Peggy Munson

http://peggymunson.blogspot.com/2009/10/mecfs-and-retroviral-elephant-mecfs-and.html


XMRV : Hope and Speculation

As someone who has wrestled with Chronic Fatigue Syndrome for 17 years, I've gorged myself on recent headlines about the retrovirus XMRV. I've reminded myself it's too soon to know what it means for me and the vast, beleaguered CFS masses. Still, hope and speculation persists.

In one study, 95% of CFS patients showed XMRV antibodies, and 4% of the healthy controls. Elsewhere, 67% of CFS patients had XMRV. So did 3.7% of the controls.

This suggests then, that not everyone with CFS has XMRV. And maybe some healthy people carry this retrovirus.

So, maybe I don't have it. Maybe you don't. This information may be of no use to us personally.

Maybe, maybe, maybe ...

Nevertheless, it lends weight to the fact that real physiological havoc is indeed taking place in the bodies of people with CFS. That in itself is good news.

I'm repeatedly surprised by those declaring there's nothing wrong with us physically, that it's all in our heads. A little therapy, some antidepressants and getting off our duffs, and we'll be right as rain. That this is depression and we should admit it and get on with things.

Jody Smith

http://www.empowher.com/news/herarticle/2009/10/15/retrovirus-xmrv-and-hope-chronic-fatigue-syndrome?page=1#comment-33611

XMRV : ME patients have never seen anything like it

The Big Picture - ME/CFS patients have never seen anything like this. And in fact it isn’t all about them. Among the stranger findings emanating out of the Whittemore Peterson Institute is the fact that this retrovirus, which had heretofore been associated only with prostate cancer in some neurological diseases was founded on most 4% of the healthy controls blood. This suggests that about 10 million Americans could be carrying a ticking bomb. It also suggests that anyone who’s having a blood transfusion could be at risk. Those two things got enough of the National Cancer Institute’s attention that it quickly convened a workshop in August on how to deal with this problem.

Cort Johnson http://aboutmecfs.org/blog/?p=920

XMRV : answers are starting to arrive

Ultimately, what does all this mean? Only time will tell. But I, among many, am incredibly hopeful the answers are finally starting to arrive.

Laurel http://dreamsatstake.blogspot.com/2009/10/cfs-linked-to-retrovirus-xmrv.html


XMRV stands for:

  • Xenotropic

  • Murine leukemia virus

  • Related

  • Virus

So, essentially, it's a virus related to a virus that causes a type of leukemia.

The term xenotropic means: xeno=foreign, tropic=growth. Basically, these viruses don't replicate or cause problems in their original source, but are a problem in other sources. Some species are naturally resistant, but others are not. This particular virus apparently originated in mice.

A retrovirus is one that inserts its DNA right into your cell's genetic makeup. In cancer, researchers believe tumors result when retrovirus DNA is put next to a gene that regulates cell growth. I don't see anything in the published ME/CFS paper to suggest that scientists know exactly where the DNA is inserted in this condition, but I imagine that will be a major area of exploration as this research continues.

Adrienne Dellwo http://chronicfatigue.about.com/b/2009/10/12/xmrv-retrovirus-linked-to-fibromyalgia-chronic-fatigue-syndrome.htm

XMRV : I found myself in tears

I think that most ME/CFS patients have heard the announcement from the Whittemore Peterson Institute about the discovery of a retrovirus implicated in ME/CFS and written up in a major scientific journal. I have posted links at the bottom of this post for those that want to read about it. There are also articles in the New York Times, Wallstreet Journal, NPR, and every major newspaper in the country. Yesterday when this was finally announced I found myself in tears as I scrolled through all the news agencies covering this story. It's big news for those of us that suffer from this disease. The mistreatment we have suffered at the hands of disbelieving doctor's, friends, and family members is about to end. Within the next year there it is likely that there will be a diagnostic test for XMRV.

http://stanford.wellsphere.com/lyme-disease-article/chronic-fatigue-syndrome-is-over-xmrv-virus-discovery/830871

From the NHS : Does a Virus cause ME ?

The front page of today’s Independent asks whether scientists have found the cause of ME (myalgic encephalitis), also known as chronic fatigue syndrome (CFS). The newspaper reported that researchers have found a “strong link” with a retrovirus called XMRV.

This study compared blood samples from 101 CFS patients with samples from 218 people without it. It found evidence of the XMRV virus in about two-thirds of the people with CFS and less than 4% of people without the disease.

These findings alone do not prove that the virus causes CFS, because they do not show whether the infection occurred before or after CFS developed. The research paper is cautious in its conclusions, saying that XMRV “may” be a contributing factor to CFS, but the opposite may also be true: CFS may make people more susceptible to infection with this virus.

Despite these limitations, these findings will be of interest to the research community, doctors and patients. Larger studies and research that establishes whether the XMRV infection occurs before or after the onset of CFS will be needed before any conclusions can be drawn.

NHS Choices http://www.nhs.uk/news/2009/10October/Pages/Does-a-virus-cause-ME.aspx

Most cases of chronic fatigue syndrome linked to virus'

Most cases of chronic fatigue syndrome or ME may be linked to a virus, according to research that could lead to the first drug treatments for the disorder that affects millions around the world.

Daily Telegraph Oct 9 2009 http://www.telegraph.co.uk/science/science-news/6276718/Most-cases-of-chronic-fatigue-syndrome-linked-to-virus.html





Please tell me what to do....

What do you do when your wife lies beside you night after night, crying in the small hours of the morning with the pain and crawling discomfort both inside and outside her body ?

I try and hold her.

"XMRV",

my wife recited in her head last night,

"will it be a cure for ME
or a distraction
requiring
psychiatric correction ?"

Nancy Klimas on XMRV


Find more videos like this on ME-CFSCommunity.com

Our Day in Court

Our Day in Court
Greg Crowhurst
16th October 2009

(may be reposted)

There is such a stark video on

http://secretsofnaturalhealing.blogspot.com/

detailing how the CDC withheld the facts, back in 1979, relating to the
danger of swine flu vaccination , from the American public, an omission which
resulted in hundreds of cases of severe neurological damage, that persist to
this day.

Shocked ? if you have experienced the hard politics of the ME world all these
years , no you are probably not anymore.

The same site points out how :

"Pharmaceutical company profits seem to be all that matters to our leaders.
For the medical bureacrats no lie is stooping too low. They have no limits to
their treachery and chicanery.
"

Oh, yes.

The owner of the site, Steve Barwick also covers the XMRV story, although
cautiously , for he is worried about Big Pharma "getting ready to use the
finding as a means of getting everyone who has been diagnosed with chronic
fatigue syndrome onto the AIDS drugs cocktail."

As a sufferer himself, he describes how :

"the medical establishment has despised the "chronic fatigue syndrome" diagnosis
ever since it first surfaced back in the 1980's. Indeed, every doctor I've ever
seen since 1993 has called the diagnosis of "chronic fatigue" a "trash can
diagnosis," meaning it's the diagnosis medical doctors give only when they can't
figure our what else to say.

In my own experience, every doctor I ever saw tried to put me on
antidepressants instead of recognizing the problem as an
infection. "

Similarly, in a scathing posting on Oslersweb. Com Erik Johnston brilliantly
describes :

" an epidemic of behavioral problems and personality disorders in doctors.

Patients expressing unfamiliar complaints to their physicians often induce the
"It's All In Your Head" (AIYH) or the "That's Impossible" response in doctors
suffering from these behavioral problems and personality disorders.

Physicians fixated upon the metaphysical belief system of "If we don't know
about it, then it doesn't exist" are suffering from a mental defect or
psychological condition known as "Doctors with Unexplained Medical Beliefs":
D.U.M.B."( http://www.oslersweb.com/blog.htm)

As Hilary Johnson so spectacularly declares though, all of this is about to
change :

"Our Vietnam war is over. Our Guantanamo has closed. The world has
flipped. It took one human generation, but it turned right side up today."

God bless us, that's all I can say.

If Mikovits is right and XMRV causes ME and given that antibodies against
XMRV have been found in 95% of the patients studied so far , it probably does,
then this discovery truly , as Annette Whittemore states, opens up "a new
world of possibilities for so many people. Scientists can now begin the
important work of translating this discovery into medical care for individuals
with XMRV related diseases."

XMRV is the first member of the Gammaretroviruses genus of retroviruses, to be
found in humans . Jody Smith describes the process :" XMRV joins with one's
DNA. It actually changes the DNA into a new thing with an XMRV twist, taking up
permanent residence. That means, if we're infected, we'll stay infected the rest
of our lives unless research finds a cure."

(http://www.empowher.com/news/herarticle/2009/10/15/retrovirus-xmrv-and-hope-chro\
nic-fatigue-syndrome?page=0,1)

The idea of XMRV as a kind of "puppet master" (Dr Bell) that allows other
infections such as EBV or HHV6 or Lyme or enterovirus to become exacerbated is
generating much discussion right now. :(http://aboutmecfs.org/blog/?p=954)

XMRV is "the breakthrough that we have been hoping for. Now we have scientific
proof that this infectious agent is a significant factor in ME/CFS." declares
Annette Whittemore.

.The day the XMRV story broke I posted this comment on New Scientist :

"16 years of never-ending suffering; that is my wife's life with ME.

No part of her is free from burning, throbbing, tearing, crawling pain ,
numerous other symptoms attack every system of her body ; every day of the last
decade and a half has been a living hell. ME has cost us any chance of having
children, its cost us friends, career and opportunity, it has forced into a
dreadful poverty exacerbated by psychiatry's claims that ME is a mental
disorder.

The stranglehold that a small group of psychiatrists in this country and the
USA, in the employ of the medical insurance industry, has had over government
policy and more shockingly over GPs and medical professionals who have no excuse
for not knowing better, for there has been overwhelming published biomedical
evidence for the last 50 years that ME is a real disease, has cost my wife and I
dear.

Can you imagine being with someone in such agony, day and night for 16 years
with nothing more to offer than your arms to hold ?

My ragged, exhausted, prayer is that AT LAST this is the turning point we have
all been holding on for.

For all the injustice, for what they have done to my wife , for all those that
they have locked up in secure psychiatric wards, and denied food and water to,
for those who have died from their interventions , for those who have had their
benefits , everything stripped away from them, I sincerely hope that the UK
psychiatric lobby will face its day in court."

(http://www.newscientist.com/article/dn17947-chronic-fatigue-syndrome-linked-to-c\
ancer-virus.html)

But is that likely ?

The multi-billion dollar psychiatric-medical insurance industry, establishment
has proven to be very adept at ignoring the truth of ME over the years. And no
wonder , as that 1979 video shows , even then, it is big business who is in
charge , exerting a strangle hold, with their propaganda, over the media and
government.

As John Pilger points out : "The press, the so-called mainstream - this ironic
term that's still used - the mainstream press and media are still and always
have been an extension of established power. The idea that it's a Fourth Estate
and that they're forever checking power is absolute nonsense and that's always
been the case."

One commentator, Lollly, on Hilary Johnson's blog so astutely speculates : "It
looks like Reeves (in the USA) will take the position that the XMRV-related
disease isn't CFS. He can then continue to claim that CFS is some form of
post-traumatic stress disorder that has no biomarkers and can absolve himself
from blame" (http://www.oslersweb.com/blog.htm)

What a pity the New Scientist turned to, of all people, Simon Wessely , for
clarification on the XMRV issue .

It was Simon Wessely who in a 2004 New Scientist article "favoured
psychological explanations for Gulf war illnesses. The only thing that could
have affected so many different people, he said, was stress, especially anxiety
about chemical weapons, misinformation about Gulf war syndrome afterwards, and
the many vaccinations Gulf troops received."

Oh well , it is going to be interesting then seeing how folk react to the 2009
Swine Flu vaccination which includes an adjuvant called MF-59 , containing a
very high dose of Squalene, strongly linked to multiple sclerosis, Alzheimers
disease, Parkinsons disease, ALS - and Gulf War Syndrome.

( http://www.newsmax.com/health/vaccine_swine_flu/2009/07/07/232717.html)

This is the same Simon Wessely, who, a year ago, in a Washington Post article,
"referenced the nineteenth century physician George Beard to attribute the
disease "chronic fatigue syndrome" to neurasthenia
(www.cfids-me.org/marys/postletter.html) .

Wessely's response to XMRV has quickly become famous : : "It's spectacular
but needs replication. And I hope that no one is thinking of prescribing
anti-retrovirals on the basis of this," said Simon Wessely, professor of
psychological medicine at King's College London. "It's very preliminary and
there no evidence to say this is relevant to the vast majority of people in the
UK ." with the condition."

How rich coming from the man whose cherished aim has long been to "eradicate"
ME as a distinct entity: if a disorder does not officially exist, then no-one
can suffer from it and there would be no need for expensive provision for it and
benefits need not be paid for it. This also seems to have been his modus
operandi in the case of Gulf War Syndrome."
(Margaret Williams 2006 , A Medical Morass
?http://www.mefmaction.net/Patients/Articles/Politics/MedicalMorass/tabid/651/De\
fault.aspx)

... As if there has been a shred of proof, all these two decades that Wessely
has been writing, that ME is a somatisation disorder.

It is enough to make you weep tears of relief that Annette Whittemore can so
confidently assert that "Patients and their doctors will soon have a blood test
to verify their diagnosis and provide the answers that they've been seeking".

But a blood test is not all that is not all we patients and carers will be
seeking.

It is not just tears of relief we are crying around the world. Oh no, hear
the lions roar of anger :

Luminescentfeeling sums it up so well :

"Give ME patients a blood test for an infectious retrovirus that is available in
the USA or we take the DOH/NHS to court

Once we have the test, we take them to court anyway for 'inappropriate
therapeutic intervention' due to misdiagnosis and wilful neglect - causing PTSD
and long term mental health problems of stress, social phobia and anxiety.
Additionally we sue for lost earnings, defamation, and avoidable damage caused
to tissues and brain." (http://www.youtube.com/watch?v=koB4r85Xk6U).

For me, though, now this day has finally come , I find myself strangely
reflecting on what Martin Luther King said :

"In the end, we will remember not the words of our enemies, but the silence of
our friends."

The daily reality of severe ME