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I plumped for the mono group improving as for me it began with the worst 'virus' I had ever known, god knows what it was. I got worse for 3yrs, plateaued for about 3yrs and began to improve to date where I am ok, about 12yrs on. I don't think that ME is something you ever fully recover from...

Just listened to the interview, Dr Phil was outclassed. He waffled, his lack of precision emphasised the weakness of his intellectual position. Well done Jen and Lindsey, a formidable team.

It's refreshing to read research that is seeking to understand rather than attempting to 'prove' a position. The views of an obviously enlightened and liberal group of doctors took me back to a rational place where humanity still had a role rather than the dogma that is usual and is used to...

This disease turned me into a carnivore......reads like a tabloid headline. I was once vegetarian, then at least ethical/environmentally responsible in my limiting the amount of meat in my diet. I had a good diet. Now I need meat, it has transformed me, increased stamina, reduced symptoms, and...

I used to get colds like anyone else till the ME struck then nothing for 7 or 8 yrs. As I began to improve I got my first cold and even in the midst of sneezes and coughs there was hope. Sad isn't it, I was happy to have a cold. I now get the odd cold or flu'y thing but not as bad as those...

After too many wasted years, when I work a full, tough day I feel a humble gratitude. This is not directed toward any deity, supernatural or human but is a felt sense of relief for not experiencing the plunge into pain, nausea and all the rest of it that could last for days or weeks. I don't...

Third week of September 2005, a severe virus ' like being hit by a train' . 3yrs going down and 7 coming back, generally a downturn in the winter and a slight rise in the spring, more noticeable as the symptoms became less severe. South west England

Brain Fog is devastating, it strips us of who are and seems impossible to explain to those that have not experienced it. It's a major symptom but seldom treated as such or even acknowledged by Dr's. I struggled for years and to come out the other side is like seeing the sunrise after a long...

All becomes clear....Harry Potter as political satire. I had underestimated J K Rowling, fooled by her prose and folksy characterisation, and being English the underlying tangle of prejudice and class bias are my normal landscape. The thickness and indigestability of the latter books, where I...

I was on high, things achieved, things completed, then Hero to Zero. It was a bug; like being hit by a train( I imagine), probably worse because you'd have to be hit by a train everyday for 5 yrs to feel like this and just sort of gently run over for the next few years. I don't play with...

I guess I am mild, though the idea of this being mild is similar to a 'gentle' shark attack, and an HR of 120 and over for more than a minute is dangerous territory for me. Resting horizontal can head it off, carrying on will just make it inevitable and worse! One oddness is that if I get up...

Sometimes when trying to see or focus on something close to me and forcing my eyes to look to one side will instantly bring on symptoms of disorientation, nausea and brain fog, backing off straight away and going horizontal till it passes is essential if it is not to turn into a much greater...

74 to go

OMG

Not Interested in Collecting Evidence. NICE is such a hideous acronym, conjouring up all the things one was supposed to be as a child, for the convenience of others. It also carries with it disappointment being the name of a cheap biscuit, a substitute for the real thing..

An Evil Cradling...is the title of a book by Brian Keenan in which he describes being kidnapped and held in Beirut by Shi'ite militia. The book is very moving but it is the title that stayed with me for it seems to describe a broader process and one that speaks of the isolation, abuse and...

As this was based on self-assessment I guess you are only as old as you feel. In which case I aged over 30 yrs in the first 3yrs of this disease and anxiety was a major problem. As I improved I got younger and became more emotionally resilient, though the period of my illness was extending...

Thanks for sharing confetti11. The isolation is a killer....supporting each other we can beat even this

I spent the first two years thinking I had fallen down a rabbit hole. Now I realise that I am still falling but so are so many others that at least I am in good company.

Do the ME centres release data, or even compile it on the outcomes of their approach? When I was 'discharged back into the care of my GP' I guess they washed their hands of me but since no GP has ever acknowledged that it exists have I been assumed to have recovered. Nothing would surprise me...

My GP suggested them for me because of breathing problems, I was so short of breath any exertion was a struggle. I had no awareness of reflux. After about a week of no change I took a breath and my upper lungs inflated. The sensation was of peeling two sheets of wet plastic apart and Pain like...

Ah PRINCE, the condition formerly known as........

laughing and meditation... I can feel myself getting better

I go horizontal as soon as I get in from work, even negative, head down..feet raised, and stay there till I have to move. I have polarised my life, I work full-time, pretty full-on but within an energy envelope and rest full-on outside of that. It's not a choice that sounds right but it works...

Much of the discrimination is silent, the abuse is characterised by neglect and facilitated by avoidance and deception. Has the importance of the doctor/patient relationship gone the same way as work/life balance; Did it ever exist or was it a convenient fiction embedded within a traditional...

support patients to be active partners in their own care. A phrase with contemporary buzz I use forum posts to challenge and re-examine my take on stuff and this did come across as Lipstick on a pig, but then I turned it around and started to look at the suspicion I hold doctors in and...

Love it. Perhaps we should have an ME friendly. logo

This the starting point and will be a generational change when doctors break free from the prejudice that exists now. What is lacking is not treatments but the will to employ them.

[ My own experience was similar, it was just one aspect of a slew mental deficits that eroded my sense of self and pitched me into massive memory loss. No recollection of major life events such as the birth of ones children, marriage, holidays...anything. Some deficits fluctuated, such as...

I wonder how the ME centres fare with their attempts to 'explain' the symptoms of sufferers? In my own experience the group that I was in shed 77% of participants by the 3rd week and I threw the follow-up questionnaires in the bin. Perhaps a more honest research topic would be..... How sick and...