Thursday, 22 March 2018

Reanalysis of Pace Data

Today a paper has been published in BMC Psychology. HERE.

It has been summarised here by Simon McGrath HERE.

And this is how I feel about it.

Having been worsening moderate at the time I was on the PACE Trial in 2007 and then going severe in 2013 (nothing to do with the PACE Trial) - there is a glimmer of light on my horizon, I can stagger around the house, my brain has come back a lot, I've been assessed as needing an electric power wheelchair and I'm hoping to be referred to the local me/cfs unit who do home visits (yay them!) for help and brain picking on my various symptoms. So that's all good. But by my standards of 2007 when I could still work parttime (albeit not do anything else) I know that person I was, wouldn't be considering those to be glimmers of hope so much as signs of how far my health has collapsed.

Anyway, this is the comment I posted on Simon's analysis.

Feel free to share it:

well those results make more sense to me! I was on the CBT of Pace Trial starting early 2007 at Kings;  they said there wasn't a magic bullet but they hoped I'd be able to do more by the end. I worked really hard at it and by the end, the therapist wrote to my gp he was someone bewildered and annoyed (my paraphrase) that this hadn't happened.

during hte period from winter 2005 (as a result of being told by a gp in 2004 to sleep less and exercise more, which sounded like an excellent plan as I loved exercise I bought a bike and commuted a couple of miles each way to work and back - I increasingly had time off sick with tonsil issues and lost my job as a result of that. I never worked full time again), my moderate me/cfs was getting worse. The CBT, by dint of us getting stuck at the bit of the Manual that was about creating a baseline (it was only during the recession 2010+ when there was no work available for a contractor with variable health that I realised trying to work was above my baseline back in 2007/08), managed to slow down the decline in health with the me/cfs, that and going from a 50 hour week to a 25 hour week at work. So I no longer had the lead carapace of fatigue a minute or so after waking. BUT my walking test, at the end I managed to do half the distance as at the beginning in the same amount of time, and the same with the up down step test. I also gave up skiing, swimming, walking for pleasure, going to church, going out with friends, cooking and working full time.

So for me, the idea that the fatigue improved but function didn't. Yes, that's totally spot on. And it's always puzzled me how my experience wasn't reflected in the overall results - particularly as the Unit implied that I was one of the few who carried on working and was therefore something of a 'poster girl' in a way.

Whilst i'm only ONE person out of the hundreds at a variety of different centres. Finally, the results make sense on the original protocols.

One other thought is that i was told at the beginning that if I didn't improve on the allocated arm, I could choose one of the other arms at the end. I chose pacing. but they didnt' have anyone to deliver it. they tried to get me to do a pacing form of get, but I was too scared. I wonder if that offer at the beginning was (a) actually translated into treatment at the end for many of the participants and (b) whether those who did take it up are a subset that can be analysed? Or maybe they did... I am not at all understanding the ins and outs.

When I went severe in 2013, living in Northumberland by then, there was no provision by the me/cfs unit to help people who had already been diagnosed and couldn't get there. So for lack of anything else, I picked up the manual. and tried to follow it. the sleep hygiene and boom and bust elements did work to stabilise me again, but again, it was by dint of reducing what I do to well frankly food and water in one end and out of the other for a year, slowly building to being able to hold my head up by myself and sit up in bed in year two, and finally going from crawling to staggering in years 3 & 4. And that was all down to giving stuff up. Which is not what the CBT itself was mostly about I think?

The one thing that the CBT on Pace gave me was this
'think about how to do things differently'

it has helped me cope with the grief of losing myself, my sense of self worth, the person I was with my career and interests and friends. It has helped me scrape together a modicum of quality of life. admittedly not one I would have recognised back in 2007 when I was terrified of jsut getting worse bit by bit and ending up in a wheelchair (now I yearn to be well enough to use a wheelchair snort). but from where I am now, there's some quality, compared to before.

So. for me, I have mixed feelings. Mostly though, I genuinely don't understand why a medical trial that was to find out if these worked, was presented afterwards as a viable cure. When it obviously wasn't. Even with the change in protocol.

If only they'd presented it as a stopgap way of maybe alleviating the worst symptoms by being consistent in using energy and doing less (which is what I did in my CBT) consistently, or merely as a way to cope mentally with the horror of your life slipping away before your eyes, then maybe, just maybe, they would have been acting as 'best industry practice' researchers. As it is, as a DIRECT result of their misguided/ accidental attempts to appear more successful than they were, a great deal of anguish and harm has been caused globally by the poor implementation of strategies that will never ever produce the vaunted results. And, sadly, they have blood on their hands for that mistake. They also have blood on their hands for not, in the face of overwhelming factual evidence, saying, ok, sorry we misstepped, let's make it right, let's analyse it according to the protocol and see what it really tells us, which is that with CBT people were less fatigued but lost function, and with GET people had more function (and presumably more fatigue). For me, as a long standing (im)patient with this illness, you know what that tells me? to look at the elements of CBT and GET more closely and find out if a balance can be found where people both increase function and decrease fatigue. As a layperson and from personal experience - that lies in doing less, resting more between activities and living within your energy envelope. Oh wait, isn't that what the patient community has said all along? Well yes. Unfortunately, that sort of pacing ISN'T what hte protocols tested. It was some never seen in real life thing called APT.

I am so sad that the reasearchers, nurses, therapists and statisticians who genuinely undertook this wanting to help us (possibly from the vantage point of high on their hobby horse but nevertheless) have found themselves in a maelstrom of accusation and finger pointing, deservedly as far as protocol changes go as far as I can tell, and also deservedly as far as their attitudes to the patient community and anyone who doesn't hold the same opinion (everyone is entitled to their own opinion but not their own facts) but above all, that their work and good intentions have caused so much harm and anguish to those they sought to help.  As individuals all those I've ever spoken to or met who were part of PACE were genuinely concerned about my health and whether I was getting help or not. In fact Kings me/cfs unit were the first people to say it's ok, it's real, you are genuinely unwell, you aren't imagining it. And for me it's not just about a fundamentally flawed trial, it's about careers broken and lost (both patients and professionals involved in the strange way the trial results were presented) but above all, lives, patient lives lost. I am so very very fed up of seeing yet another fb post for an me/cfs person who has lost their battle with other conditions, with that illness or from suicide because they just can't go on, they have no hope.

And above all, that's what the false presentation of the Pace findings did - gave hope that was an unrealistic expectation and then stole it away - that presentation sets up EVERY SINGLE PATIENT who followed the protocol on the trial (acceptable because that was about finding out if it worked or not) and subsequently who  takes the treatments as that's all that is available, on the false premise that they will fix us (which is unforgiveable) to FAIL. Setting them up to fail at a time when they are frightened, alone and often with looming financial crises as they can no longer work. Until you've been through it, you have NO idea how terrifying it is to have pain that you are not sure if it's real, to be debilitated by it, to wonder if you are making it up, if you are just being a wuss and if you could just man up you could get over it, but above all, not knowing every time you try and move or even think, whether or not your mind and body will follow instructions. I've still not got over that terror, even though mostly my body is almost reliable these days. And it's that lack of understanding of the fear caused by the illness, by the reaction of friends and family, of the general public, of health professionals that you can't rely on your own body, but you can rely on it getting worse if you try too hard, that is the real root of the rot that the appallingly presented PACE results has as it's legacy.

I'm pretty sure that's NOT what the PACE researchers ever intended. But it IS the consequence of their mistaken attempts to gild the lily with the results.

Tuesday, 13 March 2018

Recipe - Sausage braised with cabbage and apple - Time 30mins, Skill (Easy), Eating (Medium)

Hello! Well I'm a bit surprised I've not blogged for over a year here. I thought I had. I planned to... But life got in the way, firstly I bought myself a machine that cuts and draws, thinking it would get me back into doing a bit of crafting (it has) and I've been blogging about that on my other blog HERE, and also, I was getting ready to, then actually moving house, then recovering from it.

Anyway lots of new recipes in my head, if only because since I moved here, and my carers who do batch cooking on Tuesday and Friday agreed to it, I now get an organic veg box every other week. So there's LOADS more fresh veg in my diet now. The other change is that I now only have a combination microwave. No hob and no oven (the previous owners of my new palace took it with them, it had more controls than a spaceship so I insisted lol). So for now recipes will be done for people with and oven and a hob but also, for my convenience, have microwave/combination instructions also. So. Follow one or the other not both! or you'll get confused!

This week I have rather a lot of vegetables, I wasn't feeling well so we didn't cook last tuesday and I'm feeling overrun. So this recipe uses up a whole cabbage.

[Picture to follow once it's been made. In about an hour or so...]

What is it? Sausages cooked with onion and apple and cabbage on the hob or in the microwave.

Time required? around 30minutes

Cooking skill required? easy to medium. Carer needs to know how to cut up an onion and to quarter, core and finely shred (long strands) a cabbage.

Some carers are quite slow at chopping vegetables. Remember you can buy onions ready chopped that are frozen so that makes it easier and also you can I think buy ready chopped cabbage. Anyway, it may take an extra 15mins if the carer is slow at prepping veggies. They will get faster, particularly if you either show or explain what to do, OR get them to watch a suitable you tube video. Oh and a sharp knife helps!

Eating ability required? Medium. Because cabbage does need to be chewed. Obviously the finer it's chopped the less chewing, but still. Also the sausages can be skinned and cut up, or even balls of sausagemeat used instead which makes it easier but even so. I think medium.

Portion Size 4 (I usually get 5 or 6 but then I use a LOT of cabbage and have one sausage per portion)


1 tbsp (tablespoon) of olive oil (or vegetable oil)

450g (1lb) of sausages - skinned and cut into bite size pieces.

It can take time to skin them, and the carer might not want to handle raw sausage meat - so either buy skinless or get the carer to cut up the sausages after they've been cooked if you can cope with the skins. If you are ok with cutting up your own food, they can be used whole.  Sometimes you can buy raw mini sausages or meatballs made of sausage, they could be a good alternative.

If you're a vegetarian, then I think SosMix would work well here
A word about sausages, the better quality you can afford, the nicer the recipe will be. I like them with caramelized onion or with apple. Today's were venison and pork, purely because I buy meat when there's a deal on at the online supermarket and that's what they had. I keep them in the freezer til I want to eat a sausage dish for a week. I just use a pack (usually about 4-6 sausages and ask the carers to chop each sausage into say 4 to 5 pieces and then make sure they understand when plating up that each portion needs 4-5 pieces ie one sausage's worth in it)

Large handful of chopped onion (as you know from previous recipes, I buy frozen ready chopped onion)

A large apple - any sort but the crisper the better. Washed, cored and cut to bite size pieces. If you want less to chew, peel it first!

A cabbage - washed, checked for wildlife, cut into quarters, cored and cut into shreds (long thin slices). Or smaller pieces if it's easier to chew.

Splash of cider vinegar - this is about two teaspoons I think. Not more than a tablespoon. It brightens the flavour. Don't use normal vinegar! In a pinch you can use a bit of lemon juice, I keep a bottle of it in the fridge for things like this.

Salt and Pepper - to taste

Water - better to be hot, the amount depends whether you want a stew or just a moist braised dish. For a stew you are looking at about half a litre/ one pint. For a moist braised dish you are looking at about 100-200ml/ quarter pint.

Herbs - You could add whatever herbs you liked, caraway or dill are traditionally eastern european, or a mixed italian one, or whatever goes with the sausages you are using. Or none at all. I like a bay leaf in it. I put herbs in at the same stage as the cabbage and water.

Garlic - You could also add garlic if you want at the same stage as the onion. I use ready prepped garlic that comes in a tube as a paste.


Using a Hob:
  1. Heat the oil in a pan big enough to take everything, and gently fry the sausage pieces until cooked through
  2.  Add the onions (and garlic if using) on a low heat until they are translucent (see through) you aren't trying to make them crispy! If they start to burn, add a tablespoon of water or so, caramelised is fine, cremated is not!
  3. Add the chopped apple and cook for a couple of minutes
  4. Add the shredded cabbage and season with salt and pepper, the cider vinegar and the amount of water you've chosen to use. Add herbs if using.
  5. Increase heat and cook until the cabbage is softened (it's up to you if it has some bite or melts in your mouth more. Get the carer to bring you a bit on a teaspoon for tasting).
  6. Adjust seasoning and serve.
Using a microwave: (mine is an E category)
  1. Get a big pyrex dish with a lid or whatever you usually use in your microwave. ALWAYS put the lid on - it keeps the food moist, but also, means you don't have to clean the microwave as often!
  2. Put the oil and sausages in the dish and mix well. Put the lid on, cook for 2-3 minutes on full power, checking half way through and stirring. They don't have to be fully cooked through at this stage because that'll happen when the onions are added.
  3. Add the onions and mix well, put the lid on, cook for 2-3 minutes on full power, again checking and stirring half way. Add a bit of water if it's looking dry.
  4. Add the chopped apple and cook for 2 minutes on full power. Again, mix well and stirring half way. Add a bit of water if it's looking dry. Just to moisten it.
  5. Add the shredded cabbage and season with salt and pepper and the water and mix well. Cook on full power for about 5 minutes but keep checking and stirring.
  6. Add the cider vinegar and give it one more minute (the reason is I find that with microwaving either the flavour disappears for things like this, or gets super strong if you add it earlier).
  7. Check it's cooked to the right bite/softness and adjust seasoning and serve. If it's too chewy cook for a bit longer. 
REMEMBER that you're batch cooking this and microwaving to reheat so it needs to be a bit chewier than you want, so that it is the right chewiness after reheating tomorrow.

Trying to lose weight? Then don't use the oil.  Instead, put a couple of tablespoons of water into the pan first, then add the sausage pieces, onion and apple. Let them simmer for 5-10 mins, then add the other ingredients in the order above.  The flavour won't be as rich/ caramelised, so you might need more herbs, or tomatoes to compensate - or higher quality sausages.

  • I eat it just as it is. If you want it a bit richer, then a blob of creme fraiche or plain live yoghurt (good for the digestion) works.
  • Nice with a side of green runner beans or soy beans (good for ladies of a certain age) or fresh french bread & butter.  Or buttered carrots.
  • It gets better, the flavours develop the next day. Keeps in the fridge for 3-4 days as long as it's cooled fairly fast and refridgerated quickly (you have to be careful with pork)
  •  Don't see why you couldn't use beef or lamb or venison meatballs if you fancied them instead of sausages.

  • You could also use bite size chunks of any meat instead - diced pork, lamb, chicken, turkey etc.

  • Loads of different sorts of sausages - I think chunks of dried sausage like chorizo or italian or salami also works well (your carer might find it easier to deal with skinning & chunking dried sausage). I think this is originally an Eastern European dish so any of their hard sausages would work really well, or German ones.
  • Add other vegetables to bulk it out - Basically, if you've any fresh veg that you've not used up yet and is in danger of going off, this recipe can probably cope with a random variety! 

    You could leave out the meat altogether and have a medley of root veg instead.
Can it be reheated? Yes, it is even better the day after making and it is happy being microwaved (just add a tablespoon of water to stop it getting dry on reheating).

Is it freezeable? I haven't, but I don't see why not. You'd just have to be careful making sure that the pork is properly defrosted and heated right through.

Saturday, 21 January 2017

TED talk on ME by Jenn Brea

It's nice and easy to listen to, she has a lovely gentle voice, and no applause (they waved instead) cos she's noise sensitive. It did make me cry when she got to various bits, especially about people not being who they were, but well worth a watch.

If you aren't up to moving pictures, there's a transcript. There's also annotations, and she has a website with lots of info/ support links on it.

The TED Talk is HERE

Wednesday, 9 March 2016

Some thoughts on Pain

Note: This is draft, I'm still working on it. But I've added it cos today I've come across 2 people who might find it helpful. Pictures and spell check and tidying up for making sense will happen eventually

Pain is something I never really thought about before I got ME/CFS. It was something that happened only at specific times, like bashing my elbow or falling off my bike or my pony as a child. It had an identifiable cause and effect (I bang my elbow is the cause, with an effect of pain where I banged it) and was real in that it was related to some specific visible damage to my body, and acute, in that it hurt, then it healed and decreased accordingly.  In short, basic over the counter pain killers worked.

Then from around 2005 onwards I was assailed by different forms of pain. The first being random pains that either had a specific origin say my leg or arm, but no apparent cause (rather like those mystery bruises we all get sometimes, they're there but we don't remember walking into anything.)

Tuesday, 16 February 2016

All that 'giving up' and doing things differently

Back in 2007 when I was diagnosed, I ended up on the PACE Trial, randomised onto the Cognitive Behavioural Therapy course of treatment. The therapist was a nice enough chap, except for his habit of asking me a question, me answering and then him keeping asking what was behind my answer.  He kept doing it despite us both being flummoxed, as, seriously, I'm just NOT that deep a thinker! There's nothing deeper in my emotions than my first response, I'm really very shallow!

Anyway, one rather more useful repetition of his was - How can you do things differently?

To continue having interests in life, but that don't eat so much energy (mental and physical).

It's a small question. But a very useful one, whether you're mild, moderate or severely affected - because everyone who has this illness, they have to 'give things up'. It can be a 'little' thing like walking instead of taking the bus, going out and socialising less often, or a 'big' thing like being able to wash themselves or go to the loo, have a shower or even eat & drink.

Often it's a relentless succession of giving up. Within a matter of days, weeks, months or years, one ends up having 'given up' so many things that it feels like there's nothing left.

Belleville Rendezvous animation - can't cycle? watch cycling instead...

Wednesday, 3 February 2016

More breathing - abdominally

I have to say that it's come as something as a surprise to me that there's a wrong way and a right way to breathe.  It's not like it's something one was taught in school, it's something you pick up on pretty quickly at birth and, well, just keep doing if you want to not have death looming at you like an oncoming steam train!

I blogged a while ago (years?) about Fiona Agombar's relaxing before getting onto breathing exercises. Then never actually got any further.

Taken from the web cos it was pretty. I know nothing about the site it came from - but they do talk about breathing
 Recently I went a bit wonky spinewise (I may have mentioned this several times already) and inveigeled a very nice man called Paul who is an osteopath to come and see me in my house. He's also a naturopath. I'm not sure which bit of his practice the breathing comes from, but as he's somewhat holistic in approach, his practice probably doesn't have bits.

Anyway. It turns out that if you spent most of your time not moving, like me, your body doesn't work very well. Because the human body was designed to have things like gravity and movement help it to do the things it needs to do to function properly.

Creamy Cauliflower Kashmir Curry - time (30mins) eating (easy) skill (easy)

They're like buses these posts, none for ages then 3 come along at the same time. Ish.

Anyway Wednesday is cooking day. This recipe is from an old Weightwatchers book called Spice Up Your Life. I do like their recipes, they work and they taste lovely, even with their low fat and sugar substitutes, though I generally  ignore the those and use normal ingredients, like fat and sugar.

Talking of sugar, the osteopath/ naturopath has been encouraging me to stop eating sugar, and get calories from actual fats (like butter, lard, coconut oil etc) and to only use liquid oils as dressings or at the end of the cooking process so that the fat doesn't go solid when it takes me hours to eat my food - because globs of cold fat aren't too great! Anyway, I staggered onto the scales the other day and appear to have lost 6lbs. Just through not eating sugar. And also not snacking so much, cos let's face it, sugar = moreish snacks.  I'm a bit stunned because I've barely been moving inside the house and haven't been a metre beyond the front & back door more than twice since Christmas Day jaunts to the parentals for lunch and then the vet, and I've not changed anything else, though I'm probably eating more fruit and honey than usual.

So if anyone is in doubt - yes you can lose weight without moving much at all! (unless having 'restless legs' counts. I do wriggle a lot!)
In the pan, at night, in poor light. It's actually quite yellow and looks nicer in real life!