Wednesday, 7 December 2016


This is great news from Griffiths University in Australia: the National Centre For Neuroimmunology and Emerging Diseases (NCNED) has been awarded $4 million dollars to research ME. In this short clip, Professor Staines says: Exercise should be contra-indicated in Chronic Fatigue Syndrome as it worsens the clinical condition of the patient and should be avoided.

This, of course,  has been corroborated by patient testimony (though largely ignored) for decades. As my fictional character Helen Fleet, who has burning muscles at the drop of  hat, says: 'she has too much lactic acid in her legs'.

There is very fine research afoot -  the report from  the IACFSME last month in Florida.

And this: five teams of scientists awarded funds by Ramsay Award Programme.

This too: a great blog on the ethical failures of the treatment of ME/CFS in BMJ from Dr Charlotte Blease and Dr Keith Geraghty (a researcher who himself has ME). I love the term 'a caste system of illness' - I often speak of the 'casual racism' towards ME patients as if you can say what you want - any minor jab or slight is 'allowed' - because you don't really mean it (and also have no idea what you are talking about).

And Berkeley journalist/academic David Tuller, who has done so much to expose the PACE circus, is now illuminating FITNET in all its flawed and awful glory (Prof Esther Crawley's FITNET was excessively and misleadingly - unsurprisingly - reported in UK media a few weeks ago as it it were a cure for cancer).

In my early fifties, ill now for thirty-three years, I find myself even more hurt and angry at what people with ME have had to endure because of wilful ignorance. I hope with all my heart that the next generation of ill, young people will not have to suffer the insults we did and have effective treatments too if not an actual cure. (It beggars belief that in 1984, when my own diagnosis was confirmed with abnormal muscle biopsy and EMG, we had the nuts and bolts, right there, to build upon, but research was wholly hijacked in UK and taken in completely the wrong direction by 'belief-led' psychiatrists, one in particular, at the end of the 1980s).

I seem to collect inflammatory responses. After a cough from hell in August/September, I now have costochondritis, which is inflammation of the rib cage. One of the drugs I have tried is Nefopam but it cloaks me with nausea and makes me totally out of it  (I got on the wrong bus a couple of weeks ago and have probably now bumped into every 'obstacle' in my flat). I had never heard of costochondritis but it's interesting that those with fibromyalgia seem to be prone.

And something beautiful and cheering, a cat on a radiator, an iPad painting by David Hockney.


Sabine said...

Sorry to read about the costochonditris (otherwise excellent news about latest research findings). I have this a couple of times as a sideline of autoimmune vasculitis. I usually goes away by itself after a while. Hot water bottle helps. Of course, cortisone would work as well if you are up to it. All the best!

nmj said...

Hello and thanks for your comment, Sabine. I have a constant microwaved wheatbag in bed with me! I have had this now for almost three months, it has bedded in, so I just hope it will fade away eventually. I am very prone to these kind of inflammatory processes, whatever the 'itis' - it will last longer than for non-ME people. Can't have steroids for eye pressure reasons...all the joys! But on I go, on we go.

Crafty Green Poet said...

Sorry about the costochonditris, hope it doesn't last too much longer!

It's good to see the latest advance in funding, let's hope the research leads to clinical progress.

molive said...

Hope your sternum a bit better. My daughter has had this ever since she had her 2 top ribs removed (thoracic outlet syndrome/blood clots). The best, she says, is massage...I know it requires a willing pair of hands, but Manon gets better relief for a couple of days with that than pain killers.

Just read your comment about BPS rubbish/disregards for biomedical international research Nassim and yes it does concern me. But feeling utterly helpless in finding a way out of the ME rut. I watch my daughter fade... made the mistake of reading Osler's web which has left me totally gutted to think that all these years have lead to virtually no progress for PwME. We are putting savings into Invest in ME and the Open Medicine fund. Got to keep the spirits up and I feel these are the only organisations that really want results.
However I have also read your lovely book and am looking forward to Manon having a bit more energy to read.