The 7 Genomic Subtypes of ME/CFS; the future looks bright and it's down to us!

BMJ Article on the 7 genomic subtypes of ME/CFS

Quotes from the text outlining the 7 subtypes:

'Subtypes 1, 2 and 7 were the most severe.

Subtype 3 was the mildest.

Clinical features of each subtype were as follows:

Subtype 1 (cognitive, musculoskeletal, sleep, anxiety/depression);

Subtype 2 (musculoskeletal, pain, anxiety/depression);

Subtype 3 (mild);

Subtype 4 (cognitive);

Subtype 5 (musculoskeletal, gastrointestinal);

Subtype 6 (postexertional);

Subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression). 

Conclusion: It was particularly interesting that in the seven genomically derived subtypes there were distinct clinical syndromes, and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.' 

I remember when this study was first publicised, how interesting and hopeful it seemed. Hopes rose that the time when proper full clinical diagnosis, and possible treatment, even a cure, was just around the corner. Hopes rose that there would no longer be any arguments over ME being psychological, but that any anxiety/depression would be seen as just another explicable side effect of a biological disease. Just as depression is a common side effect of diabetes or many other long-term chronic illnesses.

 Then the summer's shenanigans damped us down for a while. The media and others seemed intent on blowing down our castle in the clouds puff by puff.

Reading this again today, I am filled with fresh hope. After all the disheartening bad press about shadowy death threats from crazed activists, after all the rage and vitriol poured out on those who seem not to think it urgent that all of us with M.E. should have our lives back asap.


Now, there's something to aim at that is in all our hands to influence, even the sickest. Now, there is targeted focus for fundraising towards the new vision for a Centre of Excellence for Research and Treatment of M.E. from Invest in ME

If discoveries like the one about possible ME/CFS subtypes detailed above are already happening, how much more is likely to be possible once funding and facilities are in place?

Here's how we can already start helping to make that difference:

Let's Do It For ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational bio-medical ME research, clinical assessment, diagnosis and treatment for patients, training and information for health care staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

As stated in my last post here

I've set up a page to encourage those in my life to their bit towards funding for the future of all diagnosed with ME/CFS in the UK. After less than a week, I'm a modest 8% of the way towards my personal fundraising target. And I'm still only 49! This is a real birthday present for my 50th birthday that will keep on giving something back to all of us for lifetimes still to come!

That really will be something to celebrate!

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.

Fair Warning: Coping With Unexpected Visitors

I really appreciate all my lovely friends and followers online, who make every day brighter with communication that can be paced as needed, since most of us really understand M.E. and are in a similar boat.

Real friends love us for who we really are

I really appreciate other IRL (In Real Life) friends and people, too. The closest of these usually understand that ideally I need fair warning of visits, calls, etc so I can save up some "spoonie" energy to make the most of them, if at all possible.


Not everyone does make allowances, of course.  It's so difficult for the energy-rich to get their heads round the idea of "pacing". Heaven knows, it's hard enough for us to get our heads round, isn't it? Newly diagnosed or old soldiers in the field of M.E. or other challenging illnesses alike, we can find this "pacing" lark a stumbling block when faced with chaotic old "real life". (My spellchecking just discovered that I'd originally typed "fiend of M.E." instead of "field" there - a Freudian slip, eh, guys?)

Eaten by the monster of M.E.?

I can't blame friends who want to do things with me "on spec". I don't blame them. How could I? I love them and would never want to snub or hurt them! They make life worth living, even at the toughest times when I can't see them at all.

Friends - something to celebrate and treasure! But that does mean energy outlay!

When they see me, it's because I'm strong enough to see them. I guess it's harder for them to picture me after they've gone, or I'm back indoors etc, exhausted and nigh-on catatonic with post-exertional malaise and sickening pain and nausea.

They're off again, by then, getting on with their own busy lives, unaware what it's cost me to spend some time being "my old normal self" for a bit! I would rather it was this way round than them never coming or contacting or doing something off the cuff for fear of making me ill! That wouldn't be living at all, like times when I'm housebound altogether through illness. 

Real life doesn't always support "pacing". It's full of spontaneity and serendipity. Just like me at my best!

A mate of my Mum's gave a sticker to all the lasses in their little prayer and fellowship group that I'm sometimes physically a part of, when I'm well enough to make the two bus journeys that lie between our villages. It's one of those yellow stickers sponsored by the South Yorkshire Police (and no doubt other forces round the country) that warns door-knockers:

"DOORSTOPPERS: SAY NO TO DOORSTEP CALLERS.
We will NOT buy at this doorstep from doorstep callers...
...if you don't have an appointment THEN DON'T BOTHER KNOCKING"

I'd had it stuck on the door less than a day when two separate doorstep hawkers knocked as usual. Nobody reads it. I still struggle to the door if I can (usually if I ignore it it'll turn out to be a colleague or friend, by sod's law, a bit like phone calls!)


Being an accommodating sunny soul, I usually find myself having the conversation about unwanted double glazing or the unwelcome switch of utility company anyway, when I'm well enough to stand and talk at the same time. The only time I respectfully pointed out the yellow notice, the young guy outside in the rain looked so crushed, it was me who felt bad for hours after! 

It's afterwards, frazzled and slumped that I'll passive-aggressively remember why many would just have grumpily gesticulated at the notice and slammed the door. (If you knew me in real life, you'd realise that is just NEVER going to happen!). So I end up looking like this instead:

The only folks who seem to read the warning are visiting friends or colleagues from church who laugh and say, as I let them in:


"Hahaha - should I go away again? I haven't got an appointment!"


I guess the hint's never taken by the people who actually DO rob and bankrupt energy like a vacuum sucking up crumbs! This notice says nothing about illness on it, of course. Maybe there are so many stickers about from "Beware of the Dog" to "Wet Paint" that door-to-door workers simply filter them all out?

OK. Maybe not...

I'd rather NOT put anything about my illness on the outside of my house, apart from 'M.E. Awareness' posters that don't identify me as an M.E. sufferer. Believe me, that's not because I'm ashamed. Simply because I don't want to make myself more vulnerable to opportunists. 

Well, this morning's energy is already accounted for in blogging (and all the checking, rechecking, blurred vision, rests, false starts, rechecking, rechecking, correcting, losing it all by accident etc that entails!). I had to save a thimbleful of energy "spoons" today, as it's Thursday, to put out the recycling bin. Then the box. Then the bag for newspapers. Not all at once! Mercifully I don't have much in any of them this week. But summer's going fast, and I can't afford not to have the green bin emptied, ready for any moment between raindrops when my Mum can help with the mowing and I happen to have the strength to dead-head a rose!

Somebody else with the same idea!

So that's me spent for now. People think my doorbell is disconnected as a joke. As if! We need to keep our energy recycled too!


Fair warning. Can't say fairer than that?

 Please can I recycle my energy and cells while we're at it?

Promises, promises...

The ME/CFS Worldwide Patient Alliance (MCWPA) has just posted this cartoon to ask:

Mr Obama - do you remember what you promised us?

Sadly, apart from the odd mutter in parliament when pressed about ME/CFS issues, the UK Coalition Government has so far not even bothered to make any such promise to look into the issue. No promise to focus funding for decades-overdue research into the devastating illness tht costs so many citizens worldwide their jobs, their health and their whole quality of life.

Please don't make empty promises.


We need you to deliver. Now.

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.