Thursday, 20 October 2016

Tiny Hannah's Adventures: Derby wedding with Nick

At the ceremony

Very excited!


The seating options with very thoughtful

With the Bride

Things start to get a little debauched

Serious Wedding Business with the Groom

Pace yourself, TH!


Time to bust some moves!

Saturday, 1 October 2016

Tiny Hannah's Adventures: Edinburgh with Nick

TH makes it to Edinburgh

She has a chat with the locals

Checks out the local fabric shop (she's a big fan of fabric)

She even gets a new dress!

TH does her tour guide bit


Windswept and fabulous


TH <3s Edinburgh!

Taking in the Fringey goodness

TH heads to the Museum

Bangin' tunes

TH tries to cheer up the lion to no avail

Inferior dolls


TH meets Cuthbert (who was on his best behaviour)

Thursday, 29 September 2016

Product review! N:rem Sleep Systems mattress topper (sponsored post)

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Hello my lovely loves!

As you can probably tell from the rather stern disclaimer above, and the title of this post, this is my first product review! It makes me feel very fancy... like a proper blogger! (You can’t see it, but I’m totally flicking my hair right now.)
It’s actually a really good product to start on as well, because it was something I really wanted to try before the Chronic Illness Bloggers let me know the company was looking for reviewers. Double win.

One of the most frustrating things about ME/CFS is the sleep disturbance. Sleep is hard to come by, and, when you do finally manage it, it’s not refreshing. If you’ve got pain thrown into the mix, it’s even more difficult. Given that sleep is so important, it’s also really easy to get extremely nervous about not getting enough of it, so I also have pretty bad sleep anxiety as well.
Your shape and weight make a massive difference in your sleep health too. I’m a healthy weight for my height, but I am quite curvy, and predominantly a side sleeper, so if I have too hard a mattress it can bend my spine into a pretty uncomfortable position and put a lot of pressure on my wider hips and shoulders. As a result I’ve had back pain on and off long before I got sick with ME, but the ME has brought some pretty nasty joint pains with it, mostly in my hips.

I’ve worked really hard to find products and bedtime rituals that have helped improved my sleep patterns and quality (high quality blackout blinds, a softer mattress, sleep meditation, etc), but I’m always on the look out for further refinements.
Everything I’ve tried, I’ve had to try very carefully and slowly, so as not to upset the balance so much that I trigger my insomnia or sleep anxiety.
I do still get terrible pains in my hips even with those alterations. It’s not constant, but when it does happen it's like having something gnawing on my joints when I’m trying to sleep, and sitting or lying on hard surfaces make it a thousand times worse.  Hot water bottles do help, but that’s not really an option in summer, so I was really hoping the N:Rem topper would make that extra difference.

N:Rem Sleep Systems are a company that creates mattresses specifically for people who suffer from chronic pain. The mattress (and the topper I’m reviewing) have different tablets of foam in different densities, that you can swap around to make sure the areas that need support or added softness have the best possible option for a good night’s sleep. Sounds good, eh? 

Photo from the N:Rem website

The topper itself is now no longer available, but the mattress includes the same components within the top third. Below that it’s a pocket spring mattress. 

There’s a 90 day trial on the mattress (which is pretty fantastic), finance options are available to make it more affordable (always good), and the company (who give part of their profits to charity) deliver and personally set up your mattress with it’s foam components in a suitable configuration, and will take your old mattress away for free, so I was pretty impressed with all of that.

Before we get any further, it’s got to be said, that my experiences with the topper itself weren’t as great as I was hoping, BUT, before you stop reading and write it off, I’d say that I think that that’s probably due to my specific problems rather than any fault of the product. In fact, most of the other nine reviewers loved their toppers, and after my false start I gave it to my step-sister to try (who also suffers from chronic pain), and her experiences were pretty much all positive.

Also, the company themselves were never anything other than professional and really helpful.

Basically, I’m just an awkward little pickle.

In terms of general tips and feedback on the mattress I’d say the following:

The smell of foam isn’t too bad, but I left mine out for three days rather than several hours. If you have really bad smell sensitivity I’d leave it a bit longer. You’ve got 90 days of trial on the mattress, so there’s plenty of time for airing.

The cover feels nice and is a tight fit (presumably to stop foam shifting), but it does snag rather easily so watch out for that if you’re moving it around yourself.

The topper didn’t have any handles, which was a major downside, but, from the images on the website, this is something they’ve fixed in the mattress, so that’s great. 

The zipper got stuck a couple of times when altering the foam configurations, so hopefully when adding the handles they also added an extra line of stitching to stop the loose edge of the zip getting folded back in on itself and getting stuck in the teeth. If not, that’s a major feedback point for me N:Rem!

Jess approved. Very important point.

I also spoke to company about the potential for swapping or buying extra foam tablets, and they do swap tablets during trial period for free. After the trial period, extra tablets are £20 each, which I think is really reasonable. It's excellent that the company offers this option to allow for more personalisation of the mattresses, especially if more than one person is using the mattress and they have different requirements.

In my case, I started out by trying the hip pain configuration, sent with the topper. This consists of having the firmest foam at the head of the bed, then medium, then soft (on the hip), and two super soft at the foot. (Note: the configurations have been updated on their website since I received the topper, so the new configurations are below.)

Photo from the N:Rem website

This was actually pretty good for my hips, so kudos for that, but, due to my wider shoulders (and, I suspect, being used to a much softer mattress), I found it gave me discomfort in that area instead.
I then tried a different configuration: firm, soft, super soft, super soft, medium, but there was still too much pressure on my shoulders, leading my hips to be driven further into the topper. It was better, but not ideal.
The problem was, after trying these configurations over the course of (just over) a week and not finding my optimal placement, I was getting very, very tired. And the more tired I got, the more my sleep anxiety was being triggered, and the harder I found it to sleep.
I'm pretty certain I could've have found a combination that worked with my hip pain and prevented the return of my shoulder and back pain, but, frankly, I was too tired.
I think this is where the system doesn’t work for me personally: like most things, you have to spend time trying to get it right.

Most people, even people with chronic pain, or indeed ME/CFS, can afford to have a few nights where they don’t sleep very well. I, however, cannot. My health is a pretty delicate balance at the moment, and I’ve had a lot of ups and downs recently that meant it was starting to get unsafe to mess around with my sleeping habits any more. Had it been an easier time for me in the months preceding the trial, I might have felt differently. But, in the end I had to make the executive decision to stop with the topper.
It was really disappointing, because, as I said, everyone else was raving about it, and I’m sure that if I’d been able to find the right placement for me, I would’ve benefitted from it.
Instead, I decided to send my topper to my step-sister, who also suffers from chronic pain (although hers isn’t ME related). She also has tiny shoulders, so I had great hopes for her experience.
Here’s what she had to say:

"I have suffered with chronic back and hip pain for the past year and have struggled to get a good nights sleep, so when asked if I would try the topper I obviously said yes.
Putting the topper together was not as hard as it first seemed and took around 20 minutes, and once it was on the bed it felt very comfortable.
After the first nights sleep on it I did not really notice a difference, I still felt tired and stiff as usual upon getting out of bed, but I found that after the 3rd night sleeping on it I was not as stiff and started to feel more refreshed in the morning so I assume I must have slept well.
I have continued to notice less stiffness after a nights sleep and although it still takes me a while to get comfortable enough to sleep, I do feel that I am getting a better, more restful nights sleep.
I would recommend this topper to a friend with back or hip pain, I have found it very helpful."

I think for many people this topper (and mattress) would be amazing, it’s just that my particular circumstances have meant that it hasn’t worked in the same way for me as it has for others.

I can easily imagine plenty of scenarios in which the topper would work really well for me: if I was heavier and sank into the foam more, or had smaller shoulders (or was less curvy generally), had come to this topper from a firm mattress rather than a soft one, didn’t suffer from insomnia or sleep anxiety, had energy to spare to move the tablets around more often, or was just able to allow a few nights in order to let my body adjust properly, I can see why this would be a great product. It’s just that my particular mix of issues have made this difficult.

I think, on the whole, the N:Rem system is worth a try for chronic pain sufferers. There’s a 90 day trial period, financing available, and you can swap the tablets around, so if you keep your old mattress when the new one is delivered and decide it’s not for you, you haven’t lost anything, and you haven’t had to make a large payout to try it in the first place.
And if it does work for you, then, well… a good night’s sleep is worth it!

To check out N:Rem systems, head on over, here.

Saturday, 17 September 2016

The PACE Trial Fiasco (for ME Awareness Hour blog)

This piece was written for the ME Awareness Hour blog, and you can see it in it’s proper home, here.

Hello my lovely loves,

It’s been a bit of a week filled with an odd mixture of happiness and righteous indignation for us spoonies, because the truth is finally starting to come out about the infamous PACE Trial… but it’s also been a long, exhausting road.
Pretty much all ME/CFS sufferers know all too well what the PACE trial is, but in the interest of friends and family who might not, let me break it down for you.

The PACE trial, run by Queen Mary University London (QMUL), was the biggest study ever into ME/CFS, with over 600 participants, looking into different methods used to "treat" ME/CFS. (I put treat in inverted commas because "manage" would be more accurate, as there’s no treatment for ME/CFS as yet.)

The trial looked at specialised medical treatment (SMT) on its own, and SMT with either CBT (Cognitive Behavioural Therapy), GET (Graded Exercise Therapy), or APT (Adaptive Pacing Therapy), and their outcomes were published in the Lancet in 2011. It was publicly funded to the tune of five million pounds, and the results have influenced the medical treatment of ME/CFS sufferers ever since. Before the trial was even finished, the NHS announced it would be using the methods from it to treat patients.
It’s also probably the biggest load of twaddle ever to give ME/CFS sufferers (and decent scientists, statisticians, and medical professionals) a headache.
I think Dr. David Tuller, of the University of California, said it best when he called the study “a piece of crap.” 

(He also wrote a pretty amazing three part article on the whole thing - far better than I could ever hope to produce - so, if you want to go into detail, I suggest checking it out here.)

White et al, of QMUL, had hypothesised that ME/CFS wasn't actually a disease in and of itself, but that people, after suffering an illness, would get stuck into a psychological state where they believed exerting themselves would make them ill, and that the physical symptoms were just the deconditioned state of the body. I don't need to tell you exactly how ridiculous that is to me, particularly given both the research showing that, yes, it is a physical disease, and my personal experience. How physical deconditioning would've given me the hearing of a bat, for example, I have no idea.

When it was published in the Lancet, in 2011, the study purported to have found that CBT and GET were the most effective treatments, where CBT gave an recovery rate of 59% and GET gave an recovery rate of 61%.
This seemed a little strange, as previously the general consensus of sufferers was that CBT and GET either didn’t really do anything, or actually worsened their symptoms; hardly surprising as they’re really designed for dealing with psychological illnesses and physical reconditioning, not for a physical disease that targets your energy reserves.
The media, however, lapped it up, and, yet again, sufferers were forced to see and hear headlines telling us we just had to think positive, exercise more, and ultimately try harder not to be ill.

However, those following the trial quickly realised that not all the results made sense. Participants were deemed ill enough to enter the trial if they scored 65 or under on a well known scale of physical ability, called SF36PF, or Short Form 36 Physical Function Subscale 
(where 0 is highly disabled, and 100 is completely healthy), but, when published in the Lancet, 60 was deemed to be “the normal range”. The participants’s physical health could actually worsen during the trial and they would still be counted as being in the normal range. 

If 60 was “normal” for healthy people, (or "recovered", the term they used later) then why were people who counted up to five points above that allowed to enter the study in the first place? 13% of the people in the trial were counted as recovered in two areas of its tests before the trial even began.
Obviously, that seemed rather odd, so many people asked questions, both in the medical profession and otherwise, and other inconsistencies and bad scientific practices emerged.

The level of recovery had originally been listed as 85 on the scale of physical ability, but was later dropped, with 60 becoming "normal", later implied as "recovery".

Graph and table from Peter Kemp blog, with permission, link below

The participants were given literature halfway through the trial informing them of the usefulness of CBT and GET in treating ME/CFS, and every participant knew which treatment they were receiving, potentially allowing positive bias towards those treatments (not to mention the possibility of a placebo effect taking place).
The sister trial, FINE's results, which was focused on housebound sufferers (who weren't all eligible to take part in the PACE trial due to not being able to attend sessions), were not mentioned. (The participants in the FINE trial found no real difference in their state when using CBT or GET.)

As I said above, the NHS publicly announced which of the treatments it would be using from the trial, halfway through the trial period, which could've influenced the participants even more. (I’ll not go into how bizarre it is to suggest treatments based on a trial that doesn’t include the worst sufferers of the condition.)

The PACE trial leaders did not properly disclose the close consulting and financial links leaders had with insurance companies when gaining consent. This counts as a conflict of interest and participants should have been made aware of this.

According to an article from the ME Association, "The trial was part-funded by the DWP, and was assessing the value of biopsychosocial interventions at the same time as the DWP was using the biopsychosocial model of disability to help justify cuts to disability spending."

All of the data published was based on subjective questions, and, although there were objective tests the trial had originally deemed suitable (walking for a set number of minutes etc), the trial leaders later deemed them to be unsuitable, even though they were the very people who had chosen them in the first place. This occurred after the trial had finished. 

There was a tiny graph published showing an objective step-test in 2015, but it was so small that you couldn't really get any meaningful information from it. It did, however, appear to show GET and CBT doing worse than the other groups. The community asked to see that information in greater detail, and the request was refused as "vexatious".

The community didn't give up. They kept asking, even when their questions were deemed “harassment”, and they themselves were branded “young men, borderline sociopathic or psychopathic”.

In March 2014, a sufferer named Alem Matthees asked to see the PACE trial data under the Freedom of Information Act.
QMUL still refused to publish the data and has spent £200,000 in legal fees to stop the publishing of said data, stating that they were being harassed by "a community whose members are driven to challenge the outcomes of studies with results which do not comport with their beliefs as to the causes and treatment of CFS/ME”. This was because they received so many FOI requests, and that the intent of the community wasn’t to find out the truth, but to be “vexatious”. They also counted “complaints” and “House of Lords debates” as harassment.

Fortunately, last year the Information Commissioner agreed with us, and ruled in favour of Alem Matthews, and the thousands backing him.
Last week? QMUL published some "first protocol” results, although they’ve tried their hardest not to go through with it, and it wasn’t until a tribunal upheld the commissioner’s decision they actually went through with it. 

Frustratingly, it’s still not the raw data we asked for, but even the information they have released shows a two-thirds decrease in improvers.
The CBT improver rate goes down to 20%, the GET to 21%. 

Graph from ME Action's article, link below

Not only that, but because the specialised medical treatment group had 10% improvement, the difference the CBT and GET actually made is as little as 1 in 10. Hardly the "reversal" the trial claimed.

Graph from Peter Kemp blog, with permission, link below

We still don't know the rates for recovery at the rate it was originally held at (80), or the rates of people who found therapies made no difference, or worsened their condition.

I’d like to say to QMUL, and the leaders of the PACE trial, that the whole point of science is to question things in the attempt to find the truth, and that doesn’t stop just because you’re big and we’re little, and you don’t like the questions we’re asking. 

If you didn't like us seeing the inconsistencies in your research, then you should have done the trial without the obvious flaws your fellow scientists have pointed out to you, so that they weren't an issue.
To say that we didn’t want to know the truth for the truth’s sake is absurd and, quite frankly, insulting, because the outcomes of this trial effect us far more than it ever will you.

If standing on one leg and singing the national anthem backwards would cure this horrible, harrowing illness, then I would do it, and I know all the other sufferer’s feel the same way.

I even think psychological tools like CBT have some uses - in helping sufferer’s to deal with their situation, if not actually doing anything to cure the original, physical problem - and I use them on a regular basis to help me cope with my illness, so it can hardly be said that I’m part of some bizarre conspiracy against psychologists or their tools.

GET I’m less keen on, I’ll admit, but that’s because pushing myself has only ever done me harm while I’ve had this disease, and surveys in the ME/CFS community agree with that view. Adaptive pacing therapy at least has the flexibility that allows the body to recover between activities.
(I’ve said before, and will doubtless say again, the only thing that’s worked for me is allowing myself to see ME/CFS for what it is - a physical illness - and resting accordingly. As soon as I seriously committed to proper rest, without stimuli or stress, I started to see improvement, and my regime of rest, careful nutrition and pacing has seen me come on amazingly in the last two years.)

I believe that the PACE trial has been a really harmful study for the sufferers of ME/CFS, leading us to ineffective treatments and further stigma. The continuation of trials using GET is ridiculous, and, what's more, potentially dangerous to sufferers.

This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we're close-minded members of a group that's only interested in our own views.
If you're able to publicly recommend therapies that are useless, or potentially harmful to patients, based on a flawed study to further support your own opinions on ME/CFS, then I'd suggest you take a look in the mirror, because, after all, aren't psychologists meant to know all about Projecting?

If you’d like to take a look at the sources used in this piece, please head on over to the links below. 

Dr David Tuller’s three part article on PACE, October 2015

Article from ME Association: "Break Through on PACE Trial", 19th Aug 2016

Article from ME Action: "QMUL releases the PACE data”, 9th Sep 2016

Retraction Watch: UK Tribunal orders release of data from controversial chronic fatigue syndrome study, 17th Aug 2016

Articles (and graphs, with his permission) from Peter Kemp’s blog: "PACE Trial Participants - were they exploited?”, 10th Sep 2016, and “PACE Trial Improvers”, 12th Sep 2016

Document on Queen Mary University’s arguments regarding the application of section 14 to the request, available here

Wednesday, 7 September 2016

That time I was in The Telegraph

Hello again,

Just a brief note to, firstly, say that I wrote an article that was in the Telegraph this week. Link here. It's entirely possible you already know, either because that's what led you here, or, more likely, because I told everyone I know.
It's a bit strange trying to pare down your situation to 700 words, but I'm pretty pleased with the results, even if the editing took out my favourite line!
I do feel I need to say, however, that I originally made sure to say outright that mental illnesses are real illnesses. It's just that my illness is physical.
The final edit still implied that view, but I think it's important to reiterate that.
I didn't have space to go into the importance of psychological tools in managing physical illness, or the psychological symptoms/tag-alongs of the illness (anxiety etc), and, honestly, I was worried it might muddy the waters on my views about ME/CFS.
ME/CFS is physical, we know that and we have proof, but having a chronic illness plays merry hell with your emotional and mental state, and it's important to make sure that side of your recovery or management is supported. I Skype regularly with both a psychologist and a hypnotherapist and I find both of those things immensely helpful. (Plus they're both really nice.)

Secondly, I'd just like to say thank you to all the responses I've had from people. It's been a little overwhelming and I'm not sure I'm going to be able to respond to everyone (I will try, but no promises!), but please believe that it's very much appreciated.
I will also definitely take the medical suggestions under advisement, but I am currently with the Optimum Health Clinic, getting advice from a nutritionist, and under the care of the local NHS ME/CFS clinic, so worry not, I'm not languishing in the way you might think!
The article was the bare bones of my situation, and yes, my situation is worse than others... but better than some! I'm doing well and I have been slowly improving since I first became housebound.

If you want to continue to follow the discussion on the recent research that shows similarities been sufferers' blood and hibernating animals, there's a radio piece on today on BBC Radio Scotland on the Kaye Adams programme. I think it's around 11am but I'm not positive.
They did ask me to join in via phone, but unfortunately the excitement of the article being published (and the payback from writing it in the first place) have meant that I can't be involved. They might quote my article though, so that's pretty exciting.
As far as I'm aware, Dr Shepherd, the medical advisor for the ME Association will be talking, so it's likely to be good.

Until next time, I'm sending you lots of love.


Saturday, 3 September 2016

A Very Special Book

Hello my lovely loves,

Another post! And so soon! I don't know, it feels like so much is happening at the moment that I need to keep you updated regularly or risk writing a post the length of the Odyssey if I try to save it up!
This is another one of my completed secret project announcements though, so it's been on the back burner for a long time.

You may remember that last year, at the beginning of my "You Don't Look Sick" post, I talked about a friend of mine called Nicky Boardman, who blogged about his battle with cancer in the amazing blog Too Upbeat For Cancer.
You may also remember that he sadly lost that battle. All my friends that knew him were pretty cut up about it, and it was particularly heartbreaking knowing that his wife, Kerry, and his young son, Ethan, were left without him.
I kept thinking about all the great memories we had of Nicky that Ethan wouldn't know about and I had a thought. We should find a way to give Ethan these memories.
I spoke about it with my good friend Dale, and he took my little idea and made it into a rather big idea. He said we should make Ethan a book; a book full of Nicky, so that whenever he missed him he could take out the book and look and remember.
So that's what we did.

It's taken over a year to complete it. We created an email address to gather the stories and pictures, and then I (very) slowly created illustrations for the stories, with more as backgrounds and embellishments. It's all themed around the Avengers, as Nicky was a massive fan of all things Marvel (plus, he was a bit of a superhero himself).
Dale did the lion's share of the formatting and looked into printers and papers and bindings and prices. Once we'd found a place to make it we collected money from all the contributors and a few more who'd heard about what we were doing.
We had enough for a book each for Kerry and Ethan and even enough left over for a donation to one of the many charities Kerry fundraises for in Nicky's name.
We got Nicky's brother involved so he and his family could give our gift to Ethan and Kerry and support them if they needed it.

And last week... Kerry and Ethan finally got their books. And we couldn't be prouder.

Thank you, so much, to everyone who contributed, particularly Dale for all his hard work. 
I know you were all happy to do it, even if it was hard to put your own grief aside to do so, and we couldn't have done it without you.
You've done something amazing. And you know what? So have we.


If you want to see more of the illustrations head on over to my illustration blog, here. To support Kerry's sunshine walk, head here.

Monday, 22 August 2016

Tiny Hannah sets off (and other things)

Hello again my lovely loves!

It feels a bit strange to be writing again so soon, but, as I had such a fantastic response to Tiny Hannah, I thought I'd let you know that she's off on her first adventure today.

She going to Edinburgh first, and then on to Derby, and, as you can tell from the photo below, I seem to be a bit nervous about her trip.

Fortunately, she has her Tiny iPhone with her if she gets in a jam.

As I said, the response to the doll, and the video Mum and I made, has been lovely, including a very nice mention from the Conscious Crafties, who wanted to know if I'd be interested in selling Tiny Humans through their website. (Although they, quite wisely, didn't use that slightly questionable wording.)
Unfortunately, due to the sheer amount of time and spoons it takes to create one of these dolls, it's unlikely that I'll creating a business out of it, but I'll show you how to make your own, bit by bit, on here. Perhaps in the future I'll do occasional commissions if someone really, really wants a doll made by me.
In the mean time, if you're keen to support Spoonies (and their carers) who are unable to work full time due to illness or disabilities, you can head on over to Conscious Crafties and check out their pretty impressive online shop. They're also on Facebook and Twitter.

*plans entire Christmas present list*

In other news I had one of my previous posts featured on The Mighty, which made me feel pretty bloody amazing. You can see it, in all it's glory, here. (the Dutch website that featured a translation of the same piece that the mighty chose to run), also just featured my "What not to say to Sick People" post, so that's available here.

You can keep up to date with Tiny Hannah's adventures on the blog, on my Facebook page, or on Twitter.