ME and my sister

“@ dayofthedog

I guess that depends on ones viewpoint of a 'benefit junkie' I am fairly certain that 99.9% of today's pensioner would strongly disagree with your disgraceful slur upon them and upon myself.

I have reached the statutory retirement age and consequently draw my retirement pension and all other benefits that accrue due to this .... I have paid taxes, National Insurance and other contributory deductions throughout my working life, as such I am entitled to do so based upon my own contributory record. I also have a 100% contribution record for my pension :)

I don't think this qualifies as a 'benefit junkie' in the terms you attempt to imply

by dayofthedog Monday, September 17 2012, 11:18AM
"If you cant be constructive and factual in your crass remarks then STFU .....

Thanks Karen, much love.

PS - Is it not true that you are a 'benefits junkie''?"”

“If you cant be constructive and factual in your crass remarks then STFU .....

Thanks Karen, much love.

PS - Is it not true that you are a 'benefits junkie''?”

“The paediatric CFS service run by Dr Esther Crawley in Bath she runs a clinic at Frenchey too has been a great help for my son who has had CFS for 8 years.”

“@margemily,

Thank you for the tip. I'll definitely look into it. I, too, am not as severely affected as some others on the site; what I failed to add in my comment was that it took four years of total mismanagement and a severe relapse to be taken seriously by family members, even some doctors - by which time it was essentially too late - this relapse has set me back years.

I'm also currently on Year 5 of the 3 year degree, and once I'm a little stronger I'm going to try to do it from bed via the Open University. I'm so sorry that your children found it so hard to get the state benefits I'm sure they were entitled to, and surely deserved. My heart goes out to you, and them, and prayers too. In my own opinion - if it counts for anything - it doesn't matter to what degree you have M.E. It alters your life quite dramatically; a horrible Goliath to contend with. Life is very hard with it as the implications are so far-reaching.

But - again, dear sceptics - when you have M.E, your life is turned completely upside down - it doesn't matter to which degree you have it - a condition like M.E can really drastically alter your social life, your work life, even your personal life. Families sometimes have to bend and stretch (and learn very quickly) to try to accomodate your new set of circumstances - often the prejudice against the sufferer can even be afflicted from family members, who, like others, can't see what's wrong with you - is horrendous, as it is, in most ways, an invisible illness; friends who depended on you or are used to seeing you well struggle immensely to understand- of course they don't live with you so can't see what happens after you've exerted yourself and then spent a week in bed - they can often be very cruel.

You are essentially trapped in your own body - though doctors can't often tell what's wrong with you quickly enough (and the anxiety of not knowing is a huge mental strain), you know for a fact your body is being ravaged by something.

I hope my comment didn't come across as browbeaten; if I had had enough support (emotional, as well as material) and had been granted a year or two off to slowly build up my strength and early access to an M.E clinic (many of which have been threatened with closure thanks to budget cuts) without worry of my degree/job finances, social stigma among other things, I (often) think that it wouldn't have come to this.

... that I might have been able to avoid the catastropic effects of a relapse; even if I hadn't recovered all the way, I would have learned (and the learning curve is huge) how to live within and manage my condition (over-exertion is a big problem - if done too often one can relapse quite dramatically as I did - another inexplicable part of ME - we can't just exercise our way out of this! It needs to be very gradual and controlled)...

... I think I'd be better off for it and be costing Joe Taxpayer much less than I do now, totally dependent on the state, seeing several doctors regularly and on ten different drugs.

What I'm saying is, please do try to see that those of us who live this way very, very seldom, do it because claiming benefits is easy. This is not an easy life to live (and I'm no martyr, please don't get me wrong); how I long, as well as hundreds of thousands in the country who suffer this, to be 'normal', contributing productive members of society.”

“My two grown up children have ME, but thankfully, not as severe as some people on this site. My son took 5 years to do a 3 year degree, due to ME. People don't understand the illness and it's not recognised by the Government, as you can rarely claim DLA or ESA. As far as the Gov. is concerned, if you can work two days part-time due to ME, then you can work 5 days full time. It's disgraceful. Some research has found that people with ME lack enough oxygen in their body and it can be replenished by using an Airnergy Machine. Be warned though, the machines are VERY costly to buy. Users report an energy boost when they use the machine. You can get information on it on the Internet.”

“EDIT * she became 'blind for several months'.”

“@Dayofthedog

I can understand why you believe it to be a condition of those who are lazy - I too believed it until I was affected by M.E during my second year at university. In fact, I had to drop out and then subsequently repeat a year once I recovered enough some months later - incidentally I worked very hard and achieved a First that year - it's the one thing that reminds me that I'm not by nature a lazy person. But that's a personal experience, make of it what you will.

Note, I have spent the last year almost completely bedridden; I have battled this condition for nearly five years now (I'm 23) though in this last year and a half suffered a relapse with devastating consequences - barely able to sit up, at times unable to talk, eat. I suffer from regular seizures, neck-down paralysis, extreme jerking of the body, severe fluctuations in body temperature, extreme nausea, severe photosensitivty (am having to wear sunglasses indoors all the time), heightened senses (to the effect that I'm constantly wearing earplugs indoors too) among other rather terrifying symptoms that have been unexplained. I spend sometimes 18-20 hours a day laying down in a darkened room

When I was as ill as Sophie my diagnosis was indeed M.E. I have since seen various doctors to be diagnosed with something else (depression, M.S, diabetes, lupus etc.,) but I keep getting tol that this is STILL M.E - just a rather severe form.

And I only claim the Disability Living Allowance which took several months to receive after all sorts of tests and evidence from doctors - this is not an easy thing to get - (ca 100 Pounds a week), which goes into supplements, vitamin pills, immune boosters and to pay for my carer; else I'm totally reliant on my parents for subsistence. My vitamin/supplement costs come to about £350 pounds or more a month.

Others aren't so lucky - a dear friend of mine became blind for several because of the effects of M.E, stops breathing, falls unconscious for hours at a time, .... others are fed through tubes, and another has up to sixty seizures a day at worst... One friend the other day became paralyised from the neck down just because the doorbell rang a few times causing her body to overreact.

Though I'm slowly improving and am hoping to see a time when I'm at least partially independent, please don't mock those whose battles you cannot possibly understand. Even if, (and I'm not inclined to agree), our condition is psychological in origin, don't be fooled that the suffering isn't real.

Incidentally, M.E is being found increasingly in the more developed countries that have higher levels of sanitation (oddly enough), so there's a high incidence in Europe, North America, Australia and Japan - some researchers thus think there's an environmental or viral trigger.


"They [M.E patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…" – Dr. Nancy Klimas, University of Miami, 2006 Press Conference (a researcher on CFS and other immune diseases).”

“In many other countries the disease is known as CFS, which could explain why they won't have heard of ME.

There are approx 200,000 people in the UK who have ME.
The Chief Medical Officer's Report on ME, issued in January 2002, says that "CFS/ME should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease"

Anyone who still believes that ME is "mysterious" or unexplained, or "all in the mind", or that sufferers are "just lazy" malingerers, ought to do a bit of research before spouting their ill-informed rubbish.”

“Myalgic Encephalomyelitis (ME) Is classed by the World Health Organisation as a neurological disease. It is no joke and these girls are certainly not lazy.”

“(ME) Lazyitis is the plague of modern Britain.

Whenever I travel and meet with people from other countries they have never even heard of it...but then again they don't have the same disability benefits and free national health service we enjoy.

Funny that...”