Monday, 18 April 2011


It is not a good time - especially in the UK - to have the illness known as ME/CFS, we are surrounded by grotesque characters, it feels like being in a corrupt fairytale, where the baddies are winning, and the ill people are losing. It is demoralising to say the least. Still, I try to focus on the small, good details in my life, I always have done, even during my worst times of illness. My nephews were at my mother's this weekend, it was sunny and warm, wonderful. In the evenings, we read TinTin together, I was Professor Calculus. I have never read TinTin before. And last night, the moon was beautiful.


Nina said...

I absolutely know how you feel. I often wonder where our opponents get their motivation from. We are fighting for our lives, what do they have to gain?

I just read about all the PACE criticism the Lancet is rejecting. It's outrageous and corrupt, and once again there is nothing we can do about it.

Taking breaks from all this and focusing on the small, beautiful things is a must to survive in this nightmare with no waking.

nmj said...

Hey Nina, I am not sure how I would cope with this PACE nonsense if I were still severely ill, I would feel utterly broken. I think I would have to cut myself off from it all, I am finding it hard enough as it is. But I will keep fighting them with words as long as I can!

nmj said...

This is being sent on behalf of Professor Hooper. "In view of the content of the "Health Report" broadcast that was hosted by Dr Norman Swan on Australian radio (ABC Radio National) and the comments of Richard Horton, Editor-in-Chief of The Lancet, Professor Hooper has decided to place his complaint in the public domain forthwith so that people can read it for themselves and form their own judgment. It is important to make very clear that ME/CFS is not a somatoform disorder but a serious multi-system organic disease." Please click on the links below to view the complaint on a web page or download as a Word doc. Permission to repost.

nmj said...

Let's just say The Lancet's Richard Horton was economical with the truth on the ABC radio show mentioned above. He seems very upset about the PACE protests ‘undermining the credibility & integrity of conductors of PACE’? But what about PACE scientists undermining the credibility and integrity of patients with ME?

nmj said...

link to prof hooper is broken above

Amy said...

Hey Nasim. You hit the nail on the head when you described how you'd have to deal with this PACE stuff if you were still severely ill. That's where I am with it. I feel bad for not getting more involved, but I can't listen to this radio interview you linked to, or read all the stuff on PACE.As you know, I am fighting to keep my head above water with severe ME and POTS and thyroid problems and recovery from surgery.

I don't think of PACE as applicable to me. And actually my local CFS/ME service have stated publicly that they don't intend to change their practice (which is pacing as we know it, largely) off the back of the PACE results. I don't actually get any service from them as they don't have resources for domicilliary services, but I still find it reassuring to hear that this is their stance. Still, it freaks me out to think what the average health professional I may have contact with will think following PACE.

So I'm avoiding it as much as I can, to avoid being broken by my 20 years of illness and the knowledge that no one in this country seems to be doing anything which offers me, and others, hope.

I am truly grateful to those of you who have the energy and strength to keep writing and keep fighting. Hopefully I will recover enough strength to join you.

Amy said...

Ps I am also grateful for your updates in digested form x

nmj said...

Best not to listen to radio prog, Amy, it is really so one-sided, designed to discredit PWME. A shoddy, unprofessional piece of work. I am so tired of writing/thinking about PACE, I do not want these people in my head, but they are so dangerous, they can't be ignored. The PACE trial is a gross insult to every single person with ME whether we have been ill for a year or twenty years - but it does pain me when I think back to my diagnosis in 1983/4, I was so frail, my life in tatters, how could I possibly have known that in 2011, we would be dealing with this tripe. Beyond the pale.

Morg said...

I was diagnosed with ME and Fibromyalgia last year. The diagnosis came as a both a relief and as a horror to me. A relief because I finally had a name for the crippling symptoms I was suffering and the horror because it cannot be cured. I am 24 now and still living with my parents due to only being able to work part time and also I wouldn't be able to manage on my own with housework etc.
My partner has been amazing but it was very hard for him to accept at first. Sadly the relationship is no longer working out (due to something other than illness).
Its also ridiculously hard trying to get others to understand sometimes. I only work part time and people will say "Oh i wish I had all that time off to to do (insert relaxation thing here)."
I was doing driving lessons but found I couldn't even manage that. Yet people still don't shut up trying to tell me how much easier it would make my life and telling me its just fear thats holding me back. No matter how many times I try to explain about 'brainfog' and the fatigue it just doesn't register with them.
I count myself lucky I have the friends that I do and the helpful family members, although it was very hard for them to take in as well at first. My mum had been yelling at me for the last six years of my symptoms to stop being so effing idle and get off my ass etc etc. I could not hold down a full time job and lost every one that I landed.
Its impossible trying to claim anything here in the UK because apparently if you can lift a carton of milk etc you are fit to work. Absolutely unbelievable. I just hope I don't lose the job i have now (which is going very well for me) or I will be in serious sh*t. I can't imagine any other company taking somebody on with a crippling illness. Discrimination of that kind isn't supposed to be allowed by law but its still very much there.