MRC announces ME/CFS research projects worth £1.6m

M.E. Associations breaks the news embargoed until today

This sounds like great news, if it is funding for biomedical research.

I'm not really sure what to think, yet. Any ideas on the people behind the various projects?

There doesn't seem to be an immediate drive to separate Myalgic Encephalomyelitis and its causes from "Chronic Fatigue Syndrome" with its flabby umbrella of symptoms muddying the waters. M.E./CFS is still referred to as "the illness". Frustratingly, CFS is referred to first, i.e. CFS/ME many times in the press release. Is this going to be more smoke and mirrors?

I sincerely pray it won't just be more money down the drain, like the PACE trials.

Much to be cautiously hopeful about for 2012.

M.E. in the media: the aftershocks continue

All the news that's unfit to print?

Earthquakes always have aftershocks, don't they? Just read this in 'The Times Higher Educational Supplement' online.

Just when we were starting to think that maybe, just maybe, certain muck-spreaders and mischief-mongers (oh no, could that be counted as a death threat?) had done their worst, the Times Higher Ed decides to recycle the recent press feeding frenzy and now to concertina all the accusations into one punchy paragraph.

I haven't the strength left to be surprised or disappointed (does that make me mentally unbalanced, I wonder?) It's the same old, same old, compressed into a handy pill-sized gobbet of "news" summary that makes it look like irrefutable fact.

Surely these unnamed hordes of M.E. suffering extremists must have a hell of a lot more energy than you or I to terrorise the poor ickle psychs like this?

I quote, peeping through my fingers:

• Scientists researching chronic fatigue syndrome - also known as myalgic encephalomyelitis, or ME - are being targeted by activists who are now as dangerous as animal rights extremists, it has been claimed. The militants, who object to any suggestion that the illness has psychological causes, have turned up at lectures with knives, punched scientists in the street and issued death threats, it was reported on 21 August. They are also said to have bombarded researchers with Freedom of Information requests, made countless complaints to university ethics committees, and falsely alleged that scientists pursuing work in the subject are in the pay of drug and insurance companies. Myra McClure, head of infectious diseases at Imperial College London, told The Observer: "I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse. One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months."

www.timeshighereducation.co.uk


Sadly, this is neither higher, nor educational.

Hopefully not to the psychiatric school beginning with "W"!

N.B. There was also a cartoon to go with the Times Higher Ed article, but this was later withdrawn. Hopefully they will not later claim this was because they received death threats!
If your health and blood pressure are up to it, the said cartoon can be seen here. Thanks to Dr Speedy at Niceguidelines blogspot for preserving a link to it for the sake of truth!



Many thanks for the 'heads up' about the THES article from @Velogubbed on Twitter. Her own wonderful M.E. and writing related blog can be enjoyed here:


http://velo-gubbed-legs.blogspot.com/

If you haven't read her fantastic book about her life with M.E. yet, please do yourself a favour and put that right: 'The State of Me' by Nasim Marie Jafry is available on Amazon and good bookshops.

M.E. in England; are you in a hot spot?

East Yorkshire where the incidence of M.E./CFS is reported to be lowest

Study shows prevalence of M.E./CFS in 3 areas of England

Interesting article. Having pulled green wheelie bin round side of house today am unable to engage brain now. Figures here keep defeating me this morning!

The study focuses on three areas, (though I could only see two tbh) of England comparing the numbers of M.E./CFS patients diagnosed under the various criteria, by electronic search for CFS records, and from reports by GPs. Some distinction is at least made here between M.E./CFS and cases which involve "chronic fatigue" but which do not meet such guides to diagnosis as the Canadian criteria.


The crux of this seems to be


a) London has highest number of cases


b) East Yorkshire has the lowest.


My case down the road in South Yorkshire is defeating me today. I'm struggling to find or hit the right keys and just spent almost ten of your earth minutes locating "close brackets" on my keyboard!

Let's cut to the chase:

Conclusions: ME/CFS is not uncommon in England and represents a significant burden to patients and society.

The number of people with chronic fatigue who do not meet specific criteria for ME/CFS is higher still. Both groups have high levels of need for service provision, including health and social care.


Unquote. Yes; and yes. Didn't that go without saying?

If this is further step towards diagnosing and supporting those with the disease, as well as looking to define sub-groups and moving towards suitable treatments, all to the good.


The article is enough without my searing brain-fogged analysis!

Sorry! Catch you later! (Maybe when I've had a full neuro-immune system transplant!). Spellchecker rocks.

Leukaemia Link?

The more-than-excellent NICE GUIDELINES BLOGSPOT which is always picking up information for those affected by M.E., today points us in the direction of a U.S. news item.


I haven't any spare energy to sit up typing to discuss this today, but needed to mention this.


Apparently in the U.S.A., a warning is being sent to the national blood banks advising against taking blood from those with "Chronic Fatigue" as it is still vaguely called over there.*

This is because a new study (so many unrelated studies with no joined-up thinking or focus, aaaaaaaargh!) has suggested a link between Chronic Fatigue and certain kinds of leukaemia.


My thinking's a bit woolly this morning. Before I go lie down in a spinning, burning vortex, though: What does this mean? Is it actually proven? Will we read next week that it isn't a valid study and it's all back to being in our heads? Will those with M.E. always be the last to be informed?

Rant over. Judge for yourself by clicking on the link above and taking a look at Dr Speedy's blog today, which includes a link to the US TV report.

Stay strong but also be gentle with yourself. 

*The terms 'chronic fatigue'/'chronic fatigue syndrome' etc are vague and unhelpful in defining this disease. They concentrate only on one of many symptoms, which is then frequently misunderstood as normal 'tiredness'.

It's like calling cancer 'liability to pain and not feeling A1 syndrome'. Nobody would allow that, and rightly so!

Research points very strongly to the fact that Myalgic Encephalomyelitis (M.E.) is a more accurate name for the disease, which is not just some collection or 'syndrome' of self-reported symptoms. The name M.E. refers to the disease's widespread inflammation and multisystemic neuropathology.

CFS is a dismissive, unhelpful umbrella term which discourages further research and encourages devastating misunderstanding of a disease which cripples thousands and has lead to death on more than one occasion through such ignorance. M.E., on the other hand, refers clearly and correctly to the proven underlying pathophysiology of the disease.

Playing doctors and nurses: M.E. outbreaks most common in hospitals

Royal Free Hospital, London, scene of the controversial 1955 outbreak

“Disease is very old and nothing about it has changed. It is we who change as we learn to
recognise what was formerly imperceptible.” J.M. Charcot

This quote introduces a new study by a doctor, E.D. Acheson from New York who says that out of 14 outbreaks of M.E. in one study:


7 = staff in hospitals
2 = in semi-rural communities
2 = in large cities
2 = in small towns
1 = in an army barracks


You can see the study summarised helpfully here:


The Nice Guidelines Blogspot

and the whole paper here: 


http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf


You may well have heard, like me, of the M.E. outbreaks at the Royal Free Hospital in 1955 and 1956. This is sometimes cited as related to the physical illness Myalgic Encephalomyelitis. The Wiki still mutters with vague waffling about "mass hysteria"!

M.E. has been associated with such documented outbreaks since long before the World Health Organisation finally classified it as a serious neurological, auto-immune, multi-systemic disease.

So how is it, given its prevelance among health workers, that doctors and nurses are often among those most resistant to recognising the illness?
Running scared?
Playing: "If I can't see you, you can't see me?" with the disease that stalks their corridors?

It smacks of the same perverse spirit as the assertion that M.E. sufferers must not give blood for our own protection!


If more of these affected medical professionals actually recovered enough to feed their own painful experience and first-hand understanding back into the health services, what a different perception there would be!

Individuals like Dr Charles Shepherd, an M.E. patient himself, are shining examples of those doctors affected who fight so hard to raise awareness of M.E, wherever they can. We owe them such a debt of gratitude. But it doesn't seem to be the norm for doctors and nurses to have insight into M.E. even in 2011.

So much more is needed.


If you are still confused what M.E. actually entails, M.E. Action UK has a page here http://www.meactionuk.org.uk/definition.html
which makes it plain. M.E. (CFIDS or that woolly, patronising umbrella term CFS) is not just feeling a bit tired and depressed! (We wish!)

---

Chronic Fatigue Link to Diabetes?

US study identifies fatigue as one of main challenges faced daily by diabetics


It doesn't account for all the muscle, nerve, balance and numerous other multi-systemic symptoms M.E. patients live with. But this study is of interest to those of us who also live with Diabetes.


Before I developed Type 1 in my early 20s, I heard of the friend of a friend who could struggle through the week with his diabetes, but was then invariably forced to sleep for a day solid to catch up.


Fatigue has always been a bit of an issue for me, even before I was officially diagnosed in my mid 40s with M.E. after two decades of diabetes.


We know that fatigue and sleep deprivation can quickly lead to other more complex physical symptoms involving muscles, cognitive function etc.


So, will medical research one day uncover a more tangible link between these two conditions? Even with the tightest control, ideal weight, perfect HbA1c results etc, I still have all the M.E. symptoms to a disabling degree after activity. This new study's assertion that:


People with poorly controlled diabetes are often dehydrated and vitamin B depleted. These can be significant factors causing fatigue

certainly doesn't apply to me, these days.

This weekend, for example, after an hour's engagement in leading a church service, even after sleep and rest, then another session of helping a friend with her PC problems, I am all but wiped out today. Pains everywhere, so unsteady I'm having to lie down as the ground 'liquefies' under my feet, sleeping, muscles so weak they're jerking and with my body temp and BGs all over the place. My sugars have been lower than low for no obvious reason followed by two days of double figures. Not through carrying extra weight or eating unwisely.


So it's not simple to solve it. But maybe diabetes research may feed back into M.E. research in time. I've blogged here before about the link I read about between M.E. and hypoglycaemia. Food for thought, at least.

Blood-y marvellous!

Just read an interesting post on another excellent blog here:


niceguidelines.blog


There is a new article which claims that 4.5% of those diagnosed with M.E./CFS have developed the disease after receiving a blood transfusion.


This adds to the debate surrounding the blood ban imposed on us in the past year in the UK.
Those of us officially diagnosed with M.E. can no longer give blood. Now this new study indicates that whatever organism/virus causes or triggers M.E. symptoms, may have its origins in the blood.


This doesn't take us much further down the route to a cure or treatment, sadly. 4.5% hardly sounds like a significant proportion.


I was one of those who have had many potential "trigger" events along the way i.e. shingles (herpes zoster virus), giardiasis, as well as several years of being severely crashed after the annual flu jab recommended for me as a Type 1 diabetic. The truth is out there. Somewhere. Medical science will one day hold the answers.


A little crashed at the mo after cutting a couple of twigs in the garden. The bushes have infinitely more energy than my immuno-compromised little body. Even with all my stubborn fightback impulses that refuse to be infinitely kept under by this darned disease!


Tomorrow is diabetic clinic. The moment of truth when I discover if I'm going to be taken to task for discontinuing my statins. Will my cholesterol be raised beyond reason without them? One diabetes specialist nurse and even the last diabetes consultant I saw 6 months ago suggested I try to come off them to see whether my M.E. muscle/nerve agonies and weakness improved without the statins notorious influence. Let's see which way the old swings and roundabouts go this time. Watch this shaky space!

Hot off the press - the trail goes cold yet again?

Daily Mail article: Doctors doubt virus is the root cause of M.E.

Interesting article in a tabloid not always known for its accuracy.


We shall see. XMRV viral link has always been controversial.


At least the media and, more importantly, doctors are now focusing on M.E. in a serious way, which will raise awareness and hopefully move us a step further towards effective treatments and the prospect of a future cure. If medical researchers are motivated to pursue this process of elimination to a positive conclusion, this might still turn out to be good news. 


As things stand, however, it is hard to get the celebratory bunting and champagne out, even if we had the energy or the co-ordination, balance and strength to do it!


You don't need to tell us why, any more.


You just need to tell us M.E. will soon be a thing of the past.


Frustratingly, that just seems further away than ever, if this article is to be believed.

ME/CFS AWARENESS DAY

This Thursday, May 12th marks international ME/CFS Awareness Day, part of May's Awareness Month for those affected by Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.


The world in general, as well as certain sections of the medical profession would rather turn their faces away.


Those with these crippling neurological illnesses can't turn away, much as they long to.

It's time for the world to wake up and wise up.


Please, if you know anybody who suffers from these conditions, try to give them the support, compassion and understanding they need to stop this illness (whatever label it's been given in your country) being made even less bearable because of the attitude, disbelief and ignorance of others.


Are you aware of M.E.?


It can affect anybody, man, woman or child, rich or poor.

It can  change active, vibrant, productive lives forever.


It can cripple. 


It can kill, and has killed.


It could be you next, as there is nothing  you can do to prevent it, fight it or avoid it.


But that can, and must change.


Research into the physical cause of M.E. is essential, so one day the cure may be grasped.


Understanding and research is essential, so that damaging treatments like GET or  CBT administered as if this physical sickness were some psychological aberration or self-inflicted "syndrome," can be replaced with something more than vague notions of hit-and-miss palliative approaches. A real cure for a real disease is all we ask.

Think about it. Does CBT cure cancer, AIDS or tuberculosis? NO. It can help. But it isn't all that's on offer. So how would it get to the root of an equally organic disease like M.E. affecting every system of the human body, nerves, immune system, autonomic system, muscles and cognitive function?

Some charities are already fighting for funding and rigorous research to bring ME/CFS out of the closet and into the enlightened realm of modern medicine, where it should always have been.

In the USA there's the Whittemore Peterson Institute working in research into neuro-immune disease:


Whittemore Peterson Institute website


In the UK, there is, among others, MERUK - ME Research UK


ME Research UK

and Invest in ME:


Invest in ME


and the ME Association:


ME Association


An awareness leaflet you can download to help yourself and others begin to understand this illness can be found here:

ME Awareness Leaflet: What is ME? 

One day you or a loved one may no longer have the luxury of being able to see this illness ridiculed, misrepresented or ignored. It may have stolen overnight all that you take for granted now.


Now is the time to make a difference and give ME patients a glimmer of hope for the future and a reason right now to struggle through another agonising, draining moment, hour, day.

Please don't turn away.