It’s in my blood… & it’s hopeful

This past Monday (29th August) a study was released by the University of California which confirmed a chemical signature in the blood of those with M.E./CFS. (One of the illnesses which has made me mostly housebound and stolen my ability to work, travel, socialize, do most things like a regular human being.) If replicated, this means that a blood test could be created to diagnose M.E. For any non-M.E-ers, this is a BIG deal to us M.E. lot.

Diagnosis is one thing that has seriously muddied the waters of ME/CFS research because many doctors in the UK use the rather rubbish Oxford criteria whose only requirement is fatigue for 6 months. Which, by the way, you could have with about a bajillion other illnesses and M.E. is unfortunately far more generous when it comes to nasty symptoms. This then makes research using such ill-diagnosed participants pretty useless for M.E.

The other exciting finding is that the signature pattern of metabolites in the blood, indicated a hypometabolic (slow metabolism) state of hibernation/survival (only seen in a type of worm) in 95% of ME/CFS patients. Now THAT is big. And feels pretty accurate as I do feel somewhat like a floppy, exhausted worm as I lie here waiting to have enough energy to make it to the kitchen and make a cup of coffee… Although I don’t believe worms drink coffee.

What this all means is that us ME-ers are in a constant state of hibernation/survival, wherein our bodies put growth and repair on hold and “survive” becomes the goal as opposed to”thrive”. This has been compared to “Dauer”, a stage that occurs in threadworms when threats which could otherwise cause cell death occur. They can survive like this for a matter of weeks, but it is not meant for a long term state. However, in M.E. sufferers it seems to occur for years and decades, possibly after encountering a threat such as a virus. During this state, the body – and person – suffers as it is no longer being given the normal, optimal supplies it needs to function properly.

Essentially, we are in a hypometabolic, unrelenting state of survival, which feels AWFUL; like being partially starved of food, water and oxygen, all day, every day (for 8 years in my case). Although mercifully still getting enough, to stay alive, just. It all sounds pretty grim but understanding the mechanisms behind our illness are the first steps towards treating them and with more research like this, we might not have to just survive for too much longer. Fingers, toes and knees crossed.

For a proper, in depth explanation of the findings (from someone who really knows what they’re talking about) click here

Thanks for reading,

Lara

P.S. I’m organizing a Millions Missing Protest in Oxford on September 27th, and we need more shoes to represent those with M.E. who are too ill to protest and participate in normal life. So if you’re an M.E. sufferer please send a pair of shoes along with your name, how long you’ve been sick, age and what you’re missing from your life before M.E.

Cookie Dough Ice Cream Sandwich (Vegan + Gluten Free)

One of my favourite treats (pre-vegan) was Ben & Jerry’s cookie dough Ice cream but I had never found a vegan, healthy-ish replacement, until now…. I present the cookie dough ice cream sandwich recipe that isn’t ridiculously complicated but is bloomin’ delicious. It even fooled my non-vegan brother.

Cookie dough also has a special place in my heart as it conjures up memories of my younger years when I luckily lived in California. We had regular bake sales at school and they would hand out buckets (yes buckets!) of cookie dough. I won’t lie to you, a good portion of those tubs never fulfilled their baked cookie destinies. Sorry cookies.

So here is the vegan, gluten free, dairy free (obviously), refined sugar free, oil free (basically everything free, except for taste!) answer to my (and hopefully your) cookie dough ice cream cries!

Cookie dough ice cream cover image

This recipe also doesn’t use coconut milk as a lot of the vegan ice cream recipes do. I don’t know about you but coconut milk is not my fave in recipes which it can’t be more masked in…

I also love this recipe because you don’t need any fancy kitchen tools whatsoever – no -churn and no snazzy blender. Because seriously who can afford a vitamix!?

Enjoy!

 

Ingredients:

2016-06-20 (235)

Makes 8 cookies

COOKIE DOUGH ICE CREAM
70 g Cashew Butter 100g Cashew Butter*
125g Rice Syrup (or 100g Maple) 100g Rice Syrup (or 80g Maple)
200g Oat Flour/ Gluten Free Flour 150ml Almond Milk*

Optional:

1 tsp Vanilla Extract Dash (about ¼ tsp) of Vanilla Extract
75-100g Chopped Dark Choc
Pinch of Baking Powder (for a real cookie dough taste)
Pinch of Salt

*I like to use 100g cashew butter and 50g tahini – so yum!

*I’ve only tried this recipes using Rude Health Almond Drink – it’s creamier than other almond milks. So if you’re using other almonds milks such as Alpro or Almond breeze, you might want to reduce the milk by 1/2 to make sure it doesn’t go icy due to the lower fat content!

*For a more convincing light vanilla colour raw cashew butter (not toasted) will give a better result (along with rice syrup). If you have a decent food processor you can make your own nut butters, just throw ’em in and keep grinding! But give your processor regular breaks!

I use an electric whisk to mix my ingredients, but you could also use a food processor or good old fashioned hand whisk as shown below.

COOKIE DOUGH:

ICE CREAM:

Simply slice and serve – no need to thaw!

stacking cookie dough ice cream

 

M.E. Awareness Week

As you probably already know, May is M.E. Awareness month and May 12th (today) is International M.E. Awareness day. I wanted to write something powerful and awareness raising but I didn’t know where on earth to start. Not as in I don’t know anything about the disease, or the political ins and outs of its shocking lack of recognition. I’m simply sick of trying to convey how sick I and many millions are.

Yet I have to prattle on about it because it has been so ignored for so long, and I know there are many other M.E. fighters out there suffering far worse than me. They can’t often speak for themselves, so I need to.

So I thought what the heck. I’ll get a bit more personal and tell you a little bit about the beginning of mine and my family’s journey battle with M.E. .

Where it began..

I can’t say for certain, but looking back, I believe that I have been slowly getting ill since I was about 11. I began to experience pretty bad head pain/migraines. I can only describe it as a mixture of both stabbing pains and blunt pain, as if I’d been hit with a hammer, in the back and top of my head. I remember having to go to bed for hours at a time, but I never thought anything of it. Didn’t go to the Doctor, just got on with it.

School

I had always loved netball, but as my teen years rolled by netball and any physical exertion became harder and harder. I was playing the same amount, so I knew fitness was not the issue, but all the same it got to the point where I could either go to netball practice and not be able to get into school for a few days or I could go home and collapse, hoping to make it in the next day. Again, no doctor. Just getting on with it.

217489_1026808075002_8762_n
Before it got really bad… Looking a bit too jolly!

Friends

I loved seeing friends, but again, it would get to the point where my body was screaming at me to go home just so I could collapse without completely embarrassing myself. There were many times when people thought I had just had too much to drink, which to me was a less daunting storyline to go with.

Diagnosis

I was officially diagnosed at 17, after having glandular fever and never recovering. My diagnosis came one short month after my brother had also been diagnosed with M.E. following diagnoses of ulcerative colitis and addison’s disease. I was in total disbelief and downright denial. He had become extremely ill, as in collapsing and vomiting – a lot, hospitalised, mostly bedbound etc… My thoughts at the time: No way could we have the same thing. No way could either of us have something that wasn’t going away. No way could both of my parent’s children have a chronic illness with no cure or treatment. Just no.

Denial

I wholeheartedly denied the illness from my life for almost 2 years. I made it through my last year of college albeit pretty much from home, studying by myself and then somehow after college held down a part time retail job for about 8 months. For those last 2 years of “normality”, every day my body felt like it was being tortured, but I told myself that must be how everyone felt. Again, I needed to get on with it and pull up the old bootstraps. That message along with “stay positive” were the only words I was given by a Doctor upon diagnosis. So I lived by them. I was going to get better if I just thought it hard enough. Right?

Realisation

One day in August I woke up and couldn’t move for the first 7- 8 hours of that day, not even a toe wiggle. That went on for 2 months, every day. When I could eventually move, I would literally roll and fall out of bed onto pillows I’d strategically left the night before, crawl/drag myself to the loo and then possibly slide myself down the stairs which took me a good 10 minutes. The rest of the day would be spent in a room alone, and in darkness, no tv, nothing. Sure, I’d had crashes before, but nothing quite like this.

Disbelief

All the while, my boyfriend at the time was texting me, asking : “Why I didn’t want to see him?”  “Why wouldn’t I go out?” ” Stop being so boring Lara.” All I could think was that I felt like I was dying and that when I did manage to see him, somehow he should have been able to feel the radiation of death coming off my body. I tried to tell him I really wasn’t well, that there was something seriously wrong with me many times, but he never seemed to “hear” it. He certainly never believed it. So I kept trying to live a double life. I wanted the lie of health to be true. I pretended I wasn’t stuck in a darkened room, or that I couldn’t see him texting me but hadn’t been able to reply because I couldn’t move my hands for the first half of that day.

That was almost 6 years ago.

M.E., or Chronic Fatigue Syndrome as it is also unfortunately known, is exhausting, excruciating and many other awful words. The symptoms that run through my body every day are beyond the scope of my former imagination. I couldn’t have made this illness up even if I’d wanted to. And at this age especially, the supposed “prime of life”, for so many years? Hell no.

And yet, the disbelief, and the mistreatment that comes along as a package deal with this disease, from the public to the media to the medical community, even family and friends, somehow outweighs it and brings your life that bit closer to unendurable. A margin which you thought no longer existed. This fight for recognition that you are seriously ill – the dismissal, the cruelty, and sometimes psychological, even physical abuse of patients is beyond my worst nightmares.

So for those us with M.E., belief and understanding, or the want to understand rather (because no one can ever fully understand until they’re in our bodies, nor would we want you to experience this!) that is what could mean the world to someone suffering in silence, maybe even the difference between endurable and un.

Thank you very much for reading, I can’t say how much I appreciate it.

Happy M.E. Awareness Week!

I’d like to add that today, I am very lucky to have an incredibly supportive family and a few lovely friends, you know who you are! I’ve also found so much support and “virtually” met such kind, inspiring people through the online chronic illness community.

Lara

Please sign this petition to demand more research into M.E./CFS in the UK! We need at least 10,000 signatures and we’re not too far off!

A little something that I made for the #MillionsMissing campaign. International protests taking place on 25/05/15 see http://millionsmissing.meaction.net/ for more details.

For details on the London Protest click here.

If you can’t attend, you can still send your shoes to virtually protest!

20160521_144650000_iOS

Easy Vegan Gluten-Free Brownies Recipe

BROWNIESSSSSSSSSS!

Just had to get that initial excitement out, ok let’s carry on.

Brownies are certainly up there, at least in my book of indulgent dessert favourites, so I thought I would share an easy, fudgy yet cakey-topped recipe that also checks all the “healthy-ish” boxes: Vegan, dairy free, gluten free, refined sugar free.

brownie 406

Unlike Coco Chanel’s rules for accessorizing, the rule of thumb for brownies is: more is better, when in doubt chuck another thing either in or on! Nuts, more chocolate chips, caramel, peanut buttery bits,crunchy crispy things, you name it, you chuck it! You can add whatever you want to this recipe – I love a bit of peanut butter caramel or mint choc chip ice cream!

brownie 374

For my brownie base this has been the most foolproof and yet delicious brownie recipe since my vegan journey began. It is also both friend and family approved.

As are all the best recipes, this is a one bowl stop shop. Start off with the melty bits and then keep adding everything into the same bowl, mix and you’re done 🙂

Let me know if you try this and what your ultimate brownie add-on is? I am always intrigued, and occasionally horrified, to hear what others deem as the best brownie bud.

Happy chomping!

Lara

I thought I’d add a quick step-by-step picture recipe thing, because I think it’s helpful, particularly for any of my fellow brain-foggy people 🙂

2016-05-01 (4)
1. Preheat oven to 180C. Melt 100g Dark Choc and 150g cashew butter together, then add 250g Maple and 2 tsp Vanilla extract.
2016-05-01 (16)
2. Mix/whisk together.
2016-05-01 (6)
3. Add dry ingredients: 130g GF flour, 1/2 tsp Baking powder and 1/4 tsp Salt.
2016-05-01 (18)
4. Mix/whisk together until thoroughly combined.
2016-05-01 (17)
5. Pour batter into a lined tin and bake at 180 C for 17-18 minutes
2016-04-30 (2)
6. Once baked allow the brownies to completely cool before cutting. Enjoy!

Makes 12 brownies

Ingredients:

100g Dark Chocolate (I used Green & Black’s 70% –  no refined sugar)

150g Cashew Butter

250g Maple Syrup

2 tsp Vanilla Extract

1/4 tsp Salt

130g Gluten free flour ( I used Dove’s Farm)

1/2 tsp Baking Powder

  1. Preheat the oven to 180 C.
  2. Melt your chocolate and cashew butter*.
  3. Once melted, add in maple and vanilla extract and whisk or mix together.
  4.  Add in the flour, baking powder and salt.
  5. Mix again until well combined – takes less than a minute with an electric whisk.
  6. Spoon mixture into a lined baking tin – mine is approx. 22 x 22cm.
  7. Bake on the middle shelf and check with a knife after 15 mins* – I baked mine for 17-18mins.
  8. Let them completely cool, they need to be left to gel together properly (I know it’s hard but i promise it’s worth it!)

You should end up with the perfect mix of a slightly cakey top  and beautiful fudgy, chewy bottom 🙂

Brownies are also perfect for freezing, just wrap them up and they can be stored in there for weeks. then  defrost them for 30 minutes to an hour and they’re just as lovely as when first baked.

*I used a make-shift bain marie: I set my mixing bowl over a bowl filled with hot water from the kettle – easier and less likely to burn myself!

*The knife should come out clean or with a tiny bit of brownie on the bottom, you want the bottom half to be fairly fudgy! If you like fudgey brownies of course, if not bake for a little longer!

Nutritional info: 220 calories per brownie

brownie 389

Vegan Mint Choc Chip Ice Cream Recipe

 

In the spirit of St. Patrick’s day yesterday I thought I would share something green – an easy, dairy-free, mint choc chip ice cream brownie recipe(try saying that 5 times fast). I know it’s still a bit on the chilly side it’s bloody cold, but let’s face it, if you live in England like I do then there aren’t often ice-cream-friendly weather conditions, even when it’s mid-summer, so why not mid-March!

 

mint choc ice cream 115

I’ve been nibbling my way through these bars this week as my glands have been even more swollen than usual (Fun fact: lots of people with M.E.have constantly swollen lymph glands and sore throats) and in times of frustration and pain they’ve given me little moments of enjoyment and relief – thanks ice cream!

Now I don’t have an ice cream maker, and I sure as heck don’t have the energy to be freezing and whisking a mixture every 30 minutes (something I foolishly once attempted, but had collapsed by the time round 2 of whisking was upon me). So, I needed an easy ice cream recipe whereby my blender did all the work for me, and the end result wasn’t an impenetrable chunk of ice… and I’ve come up with a few so watch this space…

I try to stay away from fake colourings and additives wherever I can, so spinach is the one to thank for the pretty mint green-ness here – but don’t worry I promise it is totally undetectable in taste!

mint choc ice cream 095

This recipe is:

Vegan

Dairy free

Gluten free

Refined Sugar Free

Oil free

mint choc ice cream 223

Makes 8 squares or 16 mini squares

Ice Cream:

150g or 1/2 Can of Coconut Milk* (refrigerate overnight, you only need the solid cream)

150g Cashews (soak overnight)

100g Maple Syrup

Small handful of spinach

¼ tsp Vanilla Extract

¼ tsp Peppermint Extract

Pinch of salt

30g Dark Chocolate for decoration*

Easy Raw Brownie:

– You could make an extra healthy raw brownie using dates, nuts and cacao powder but I didn’t have the energy to clean the food processor so this is my easier version!

50g Cashew Butter (or 30g refined coconut oil/30g cacao butter/30g dark choc + no cacao powder)

50g Maple Syrup

60g Gluten-free flour or Oat flour (blended oats or whole oats if you fancy)

1 tsp Raw Cacao Powder (or replace with 20g melted dark choc,and 20g less cashew butter)

A pinch of Salt

1/2 tsp Vanilla

  1. Soak cashews in water overnight or for at least 4 hours in warm water.
  2. Drain and rinse cashews.
  3. Scoop out the coconut cream and discard(save) the water from the can. Melt the coconut cream – unless you have a powerful blender.
  4. Pop all ice cream ingredients in your blender, except the chocolate! Blend until super smooth – this took a few minutes in my blender, and I gave it a rest break or 2 because it’s not a super snazzy one!
  5. For best results, chill mixture for a few hours in fridge. This means the ice cream is less likely to become icy, which nobody wants.

– If you just fancy the ice cream without the brownie, then pour the chilled ice cream mix into a tray covered with baking paper and then sprinkle on your chocolate chunks, cover and freeze for 6hrs minimum. Et Voila!

  1. Brownie time: Mix cashew butter, maple syrup, cacao powder, vanilla and salt together. Microwave the nut butter slightly if it’s a bit tough to mix. If you use coconut oil or cacao butter replacement these will need to be melted.
  2. Add flour and mix, then pour and push down into moulds or a tray covered with baking paper and freeze.
  3. Once the ice cream mixture has chilled, pour on top of brownie mixture and sprinkle dark chocolate chunks on top. Freeze for at least 6 hours or overnight.

Enjoy!

Lara

*You only need the coconut cream so refrigerate the can of coconut milk the night before and the cream will separate. Turn the can upside down and open, this means all the water is easy to pour off and you’re left with scoop-able coconut cream. You can also sub 100g cacao butter instead of coconut cream and add 50g more of the soaked cashews.

*I used 70% Green and Black’s chocolate as all ingredients are organic, it’s dairy free (as dark choc should really be) and they use raw cane sugar 🙂

Valentine’s Strawberry Cheesecake

strawberry cheesecake 133


I have been meaning to write up and post my recipes on here for literally ages, but as the M.E. game goes, you don’t always get to do what you want when you want! So I’m very pleased to finally be getting round to it. I’m not the best recipe keeper i’ll admit, so it will be handy to get some of my favourites online!

It’s Valentine’s Day this Sunday, an often dreaded day by us singletons! If you’re feeling a bit downhearted about Valentine’s day (or not!) then this cheesecake will make you glad there isn’t a boyfriend or girlfriend that you have to give the last piece to! Equally if you’re all loved up this could be the perfect treat for you and your partner to indulge in (sorry that you have to share). I’m looking forward to it as we are having a few of our family around which will be lovely and of course it’s the perfect excuse to whip up a tasty, healthy-ish dessert! And obviously for a valentine’s treat, strawberry and chocolate came to mind…

 

strawberry cheesecake 066

 

I have to warn you, I think this dairy-free strawberry cheesecake is pretty delish, and the chewy brownie bottom is just…you’ll see. I would advise to only tuck in with other people in the room, otherwise there is a good chance you might end up eating, well, all of it (if you’re anything like me!). It feels like a Rachel/Chandler cheesecake fiasco waiting to happen.

This recipe is:

Vegan

Gluten free

Dairy free

Refined sugar free

strawberry cheesecake 166

 

Strawberry Brownie Cheesecake

Serves 4 – 6

Makes a mini cheesecake (10cm tin)

Ingredients:

Brownie Base:

70g or 1/2 cup Cashews

10g or 2 tbsp Cacao powder

100g or 3/4 cup Medjool dates

10 – 20g or 1 -2 tbsp Maple Syrup

2 pinches of Salt

3-4 drops Vanilla essence

Strawberry Cheesecake:

100g cashews (soak for 4 hours minimum)

50g melted coconut oil (I don’t use raw as it has a less coconutty flavour)

60g Maple Syrup

150g strawberries + a few more for decoration

Optional:

Pinch of salt

Squeeze of lime

(This makes a small cheesecake measuring 10 x 10cm so I think double or even triple the amount would make a normal sized cheesecake.)

  1. Soak  100g of your cashews in water for at least 4 hours, you can also leave to soak overnight.
  2. For the brownie base: blend dry cashews in food processor until fine (don’t worry if there are a few little chunks)
  3.  Add the medjool dates and maple syrup, blend until it starts to come together in a big gooey ball, yum! (If your medjool dates are on the dry side or your processor is on the weak side, soak in warm water for 5 -10 mins)
  4. Add remaining brownie ingredients and blend until thoroughly mixed.
  5. Line your cheesecake pan with baking paper and push brownie dough into bottom with fingers. Pop it in the freezer!
  6. For the cheesecake: drain and rinse soaked cashews and then chuck all cheesecake ingredients into your blender. This took around 1-2 minutes in mine.
  7. Pour the cheesecake into the cheesecake pan, cover and refrigerate. If you need it to set faster put it in the freezer for at least 1 hour.
  8. Tuck in and enjoy!

 

I think raw desserts like this are perfect for  busy people or very unbusy people like myself who have to ration out energy expenditure, as I can make this as much as a week in advance and keep it in the freezer. Then serve up a lovely little creation to family/friends – no muss, no fuss.

Have a Happy Valentine’s Day!

Lara

New Year, Same ME

 

This is a little belated given that we’re now passing mid-January, but my excuse is that we recently moved house and have only just gotten internet again, (hurray), so I thought a New Year’s post could still be justified…just.

Every other email I’ve seen over the last few weeks has been about setting your New Year’s resolutions; achieving those long-forgotten goals that you swore to commit yourself to around about this time last year. Getting that dream job, losing those dreaded last 10 lbs, generally just waving bye-bye to the old you, and saying “hey there!” to the new one. Having a chronic illness throws a fairly big spanner in the works when it comes to achieving, for want of a better word, “normal” goals and unfortunately a new year doesn’t mean magically waving bye bye to ME (if only!!). But as rubbish as being indefinitely ill is, I feel that it’s also given me a bit of perspective on just how easily goal-setting can end up being something negative as opposed to the positive thing that it was meant to be.

Don’t get me wrong I am gung ho for self improvement and goal setting, just when it’s for the right reasons and done within reason. It seems all too easy to get stuck on a hamster wheel of relentless self or life improvement, constantly in need of reaching yet another goal in order to feel worthy or happy, in a weird competition with the “yesterday you”. So you forget to appreciate today, and where you are right now even if it’s not all sunshine and rainbows. I certainly wish I had appreciated my health more, and what I could do with it, when I had it.

Because what happens when, despite your very best efforts, you just don’t achieve those goals? The best mind-set would be: I gave it my all and that’s what I’m proud of, that is what I truly promised myself I would do. But it is easier said than done! Sometimes that thought can quickly become “I must not be good enough” or  “I should have done more” (even if doing so wasn’t possible, or perhaps could have permanently compromised your health; it’s just not worth it!).

I definitely used to get stuck in the latter mindset (particularly when my health first started deteriorating) and it can still sneak in from time to time, wherein because I didn’t quite achieve a goal, (usually because I was too unrealistic and in denial of my ill health) I would then feel inadequate or downright useless! That feeling could quickly domino and before I knew it I was knocked down by a giant wave of self-doubt. It’s like Inception: a planted seed of unworthiness that grows throughout the layers of self, without the bonus of Leo Dicaprio or Tom Hardy… So I would push myself, not too often luckily, (I wouldn’t call myself a total perfectionist or anything) but occasionally, and my health would suffer. Only after 8 years plus of chronic illness (and watching my brother fight the same illness) has it truly sunk in that nothing is worth compromising health (except perhaps if Tom Hardy suddenly knocked on my door and wanted to whisk me off to dinner… he might just have to carry me) and that actually you can still be happy even if the goals you once dreamed of reaching become unreachable for now.

tomwink

So with all that in mind, I think my New Year’s resolutions reminders to myself are something like this:

  • To appreciate every day, all the little moments, and not to think too far ahead.
  • To continue to focus on the things that I can do, whether that list becomes longer or shorter; rather than letting the “can’t” list cloud the way.
  • To try my best not to compare myself to others (we all do it sometimes!) CHEESE WARNING: there’s only one me! So it’s pointless to compare my life and what I’ve ‘achieved’ to someone else’s, I simply have a different measure of achievement.
  • To do my best to support friends, near and far; as Maya Angelou said, to try and be a “rainbow in someone else’s cloud” (without compromising my health).
  • To be braver and share more posts on here. I write bits and bobs whenever my hands and brain will allow, but I often doubt whether anyone would find them remotely interesting. Who cares, even if no one reads this, I enjoy writing it!
  • To hopefully continue to make jewellery when I can and fundraise a little bit for the ME Association. It’s reignited my creative spark that was put out by my illness onset during my teens; there’s nothing quite like losing yourself in something creative and being able to give a little something back to the ME community at the same time.

Thank you so much for reading! I hope that your 2016 will be full of wonderful surprises and the best health and happiness that is possible! I hope you also give yourself a giant mental hug for everything you got through, everything you achieved, big or small in 2015 (I certainly will!).

Lara

20160119_165531000_iOS (2)

The “recovery” cover-up & the dangers of graded exercise in ME/CFS

The 28th October was a distressing day for all of us who suffer from M.E.

M.E. (Myalgic Encephalomyelitis, sometimes known as Chronic Fatigue Syndrome) is a serious, potentially life-threatening, neuro-immune chronic illness which affects 250,000 people in the UK alone. Defined by the World Health Organisation as a neurological disease many moons ago in 1969.

Yet here we are 46 years later, with the UK headlines of the day stating that ME/CFS “…is not a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively…” by employing Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). This was all based on psychiatrist Professor Michael Sharpe’s interview following an article in the Lancet Psychiatry journal. The findings presented in this journal were based upon the PACE trial from 2011 but cleverly repackaged by Prof. Sharpe and co to appear as if this was a new study and not the profoundly flawed PACE trial.

Telegraph article: Chronic Fatigue Syndrome sufferers ‘can overcome symptoms of ME with positive   thinking and exercise’

The PACE trial has been heavily criticised worldwide and renowned New York Times journalist, David Tuller published an insightful and highly critical article pointing out the blatant flaws of the PACE trial and called for an independent investigation, just a few short days before the latest sensationalist wave of ME headlines hit the UK shore.

David Tuller – Investigative journalist and public health expert debunks     PACE trial

A major PACE problem:

  • In order to be accepted into the study, patients had to score 65/100 or lower on physical function (healthy people score 95 – 100). According to the original trial protocol patients had then to reach a score of 85/100 after “treatment” in order to be deemed “recovered”.  However half way through the study the authors decided to change this threshold of “recovery” down to 60. That’s a psychology 101 no-no. Essentially a patient could enter the trial at a functioning level of say 65/100, get worse, score 60/100 and be deemed “recovered”. Crazy, right?
  • Furthermore, a person suffering from congestive heart failure scores around 57/100. So how can 3% more than that possibly be considered healthy, giving someone the ability to live a full life? Essentially the use of the term “recovery” should be replaced with “a level of function similar to that of someone with congestive heart failure”.

This is what these headlines have been based on, manipulated data and a major misuse of terminology.

If there had been a significant improvement – great! But the fact is there wasn’t, and to add insult to injury, these headlines will reinforce the previously dissipating, ignorant idea that people with ME who haven’t improved are lazy and negative.

I have read account after account of ME sufferers who have been worsened by GET and CBT, never to have recovered years, even decades later; the ME Association have been flooded with such accounts. These people’s lives are being stolen from them partially by ill-advised doctors, and then they’re blamed for not having tried hard enough; they tried so hard that their body started to shut down. Victim-blaming at its finest.

This isn’t just an ME issue, this is an issue of social justice whereby the vulnerable minority of the day is once again being silenced and slandered; a political issue of power and cost-cutting is being disguised as a well-meaning, “scientific” issue. We’re talking about individuals who have been wrongfully and forcefully institutionalised for having a physical illness (See Karina Hansen’s story here, sadly Karina has sustained brain damage whilst being psychiatrically treated) and have even died as a result in some cases (See Sophia Mirza’s story here).

Does anyone else feel like we’ve tripped and fallen back into medieval times?

Luckily, we are the information generation and there is something we can do about this, we can make ourselves heard. We are not a “vocal minority” as Prof. Sharpe would have the general public believe. We are a majority of 250,000 people in the UK alone, and millions worldwide, who are essentially being dismissed, degraded and, as a result, being physically harmed due to a severe misuse of GET and CBT.

Let’s stand together and sign the ME Action Network’s petition to get all uses of the false term “recovery” retracted from the original Lancet article – we’ve already reached 3,000 signatures in less than 24 hours, this can make a difference.

You can also head over and support the ME Association who continue to campaign for the removal of GET from ME treatment guidelines.

UPDATE: Some brilliant news to balance out the aforementioned controversy – the US National Institute of Health has just announced that ME/CFS will now have a home within the National Institute of Neurological Disorders and Stroke (ME/CFS had previously been housed in Women’s Health despite affecting both men and women) and have a research protocol in place which will intensely study ME/CFS. Thank you NIH! Come on UK, it’s our turn to catch up!

Lara

Severe M.E. Day – The Living Death Disease

I’m unintentionally starting this blog off on not the fluffiest of subjects but an incredibly important one that needs to be talked about: M.E. (Myalgic Encephalomyelitis) A.K.A CFS (Chronic Fatigue Syndrome). But boy does the latter do an injustice to the horror that this illness can be; as one sufferer puts it “it feels as if someone has drained out all your blood and replaced it with concrete”, and that is only the beginning…

Today is “Severe M.E. day” and I felt compelled to do my little part and write. After all M.E. is why I’m mostly housebound and even considered writing a blog in the first place , but luckily most of the time I am only “moderately” affected– but we’ll get into that in another post. Today is all about the 25% of severe M.E. sufferers, approximately 60,000+ people in the UK alone, who are existing in a living death: completely bedbound, often paralysed, too ill to speak or eat, meaning some have to be tubefed, amongst many other symptoms such as constant excruciating pain. There is currently no cure and no effective treatment.

“[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University

If you don’t have M.E., or I guess even if you do, it can be really scary to talk about, particularly at its most severe.  After all it can happen to anyone, and yet that’s exactly why it needs to be spoken about.

8th August (today) is the birthday of Sophia Mirza. Sophia died at the age of 32 from M.E.  She had kidney failure and inflammation of the basal root ganglia (part of the spinal cord), both of which the coroner stated were a result of her M.E., which she had been battling for 6 years prior.

About a year before her passing, police kicked Sophia’s door down and forcibly removed her from her caring mother. She deteriorated whilst in hospital for 2 weeks and came out sicker than ever (released only thanks to her mother’s appeal).  The reason for her hospitalisation? A psychiatrist who saw Sophia for 20 minutes with no physical exam who decided that her mother must be “keeping her ill” (found to be wholly untrue) when in fact her mother was keeping her daughter alive. The hospitalisation was too much to recover from and from then on Sophia’s health gradually became worse and worse until she died.

Sadly this is not the only story like this; there are many.

I’m sure someone might be thinking “yes, this is all awful, but there are many awful diseases out there…” and yes you would be absolutely right. However, the truly shocking thing about M.E. is that it is so incredibly underfunded and sufferers are so often left in the dark (literally) by the majority of the medical community whom have ignored and even denied this disease for far too long. Even though there is now a multitude of studies showing this to be serious, physical illness , people have quite literally been ABANDONED.

Thankfully things are starting to change, more and more research is slowly coming, but we need to encourage much more; there is still only the equivalent amount of funding for M.E, a potentially fatal illness, as there is into hayfever!

So if there’s any small thing that you can do to help spread awareness on behalf of all the severe M.E. fighters like Sophia who cannot speak for themselves – even just educating yourself more on the illness by watching the video below, signing this petition, or even giving to the Open Medicine Foundation Study  – please do it. You simply cannot imagine just how desperately ill M.E. can make you feel until you have it, please don’t dismiss it.

https://www.youtube.com/embed/9_HwOUiImvw” target=”_blank”>

That’s enough doom and gloom for today (although it’s positive really, raising awareness and all, and encouraging research). Thanks so much if you read this and I’ll hopefully be writing another post before long!

Lara x