Some links this week.

Paradigm Change has produced a website with an excellent synopsis of ME that must be shared.

This article is in need of comment by research scientists. It is unacceptable that PLOS One is allowing these researchers and Queen Mary University to use the same defence against release of anonymized individual level PACE-based data that they have already lost in court over with the original PACE trial. Patients want money spent on real science, not on defending politically biased studies which are unable to reveal how they reached their conclusions or allow others to attempt to replicate their results.  Expression of Concern: Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis

Esther Crawley has libelously accused Virology’s David Tuller of libel during a slide presentation at the annual conference of the British Renal Society. Read about it here.

Would the Renal society accept gaslighting of sick kidney patients? Shameful that they allow Crawley to come gaslight ME patients and attack our tireless (see what I did there) work to campaign for physiological research in the face of continuing attempts to hijack research funding for further “bio-psycho-social” model politics which continue to undermine patient welfare in the UK.


“Don’t Call Me Inspiring” and other ableist memes

When your disability basically amounts to a physical barrier, I can see how it can be annoying to have people find you inspiring for being able to get your wheelchair into the local chicken shop for some fast food. And yet, I am finding these articles more and more painful to read because, for me, getting out with my kid for the day is generally a minor miracle of prior planning, having rested up ahead of time. A miracle for which I will likely suffer payback later in the form of a pain and fatigue flare. (Of course, I wouldn’t  be able to eat at a chicken shack because of my M.E. related food sensitivities, and every time I eat out is a total crap shoot).

And, it seems to me, in this time of austerity, the media is more than keen to publish these “I’m just like you, I can do everything you can do” stories, which are quite positive for getting forward disability-inclusive, “don’t be a douche” messages that the public does need to read. Because, well, it is a bit shit to be praised for putting on your shoes if that is easy for you to do. But protesting these things so loudly feels a bit like throwing those kids who can’t put on their own shoes under the bus. And it also feels like buying into the party line that is taking away disability benefits from people and leaving them destitute. And lets be clear here, even people with disabilities which affect their lives in the most structurally minor of ways are still faced with added costs, stressors, and discrimination in their lives because of that disability.

Those of us who are up against the biggest hurdles of getting and keeping disability benefits, are folks with invisible disabilities, especially people with ME. We who struggle to find understanding GPs and specialists (struggle to communicate with them even when we do because of cognitive dysfunction), who struggle to get the help we need at home, who have trouble stringing a sentence together, let alone filling out a form for government assistance, struggle to pass benefits inspection because we can’t hold down a job or do our own shopping reliably but we can walk X meters and wipe our own arse, and who may not actually be getting the adaptive equipment or care packages we need to stop us being housebound even on our high functioning days. And if I manage to make it out to do my shopping, why am I *not* able to claim rainbows shoot out of my butt inspirational goddess of everything status. Instead I’m still worried that I don’t look sick enough to be in the disabled parking or for my husband to be pushing me around in the crap store wheelchair. And I haven’t even had the mental or emotional energy to claim any benefits yet. So maybe we need a little less of fitting in by “I can do everything anyone else can do” and a little more of “I’m just like you but my life is a bit harder in some respects and I need a little extra help at times….but leave me alone while I’m ordering my chips anyway because people aren’t meant to speak to strangers in public spaces, this is England FFS”.

But for myself personally? Guess what?? I need some f***ing praise for having gotten out to the park with my kid, my legs will be swollen for days afterwards, and everyone is giving me the stinkeye for watching him play from the park bench. My anti-migraine pill is wearing off and it took me 7 tries to retype “inspiring” up there in the title (and two more just now in this sentence). I have a genius-level IQ and this level of cognitive dysfunction is infinitely annoying, to say the least. Making a cup of coffee or folding the laundry is never something I thought that would applaud myself for doing, but it’s been a good day if I can do it. On a bad day that bag of laundry looks like a bag of kettle bells and I can’t lift myself up or think past the brain fog or the pain to consider what needs doing next. People with M.E. are generally anything but applauded as inspirational. For the most part we’re ignored, disbelieved, or treated as lazy fakers or just general nutters. We *need* some praise going our way. For all the little miracles that we manage. For getting through half-term with our kids. For not giving up when we are not just left with such a devastating illness in itself, but then on top of everything so let down by the medical establishment, lack of research, lack of support and government bullshit. I have new symptoms all the time and then get made fun of (good result) or chastised (bad result) by my GP when I seek help for them. Every day seems so much harder than the next. I really could do with being called an inspiration for dealing with this crap for just one damn day. I would definitely trade this disease for being a mildly patronised but otherwise healthy and smug paraplegic with a set of awesome wheels. Because guess what, not every disabled person *can* just get about their day being normal and just doing all the normal things everyone else can. And it’s not ok to seek normality and acceptance through the sort of ableism that quietly undermines true disability awareness and supports government austerity arguments. Especially if it ignores my magical arse-rainbows what I made today.

I promise I’ll have an un-grumpy blog post one of these days. Maybe. Meh.



I’m getting on with my days. Getting on with my pacing. Getting things done when I can. Resting when I can’t. Taking my supplements. Trying new meds. Looking after my boy. Gently pottering.

And being mostly housebound.

And sometimes it just slaps me in the face and I just can’t f***ing take it anymore. The idea that I will keep deteriorating, despite the pacing. I can’t take it. The knowledge that there is nothing I can really do about it. That trying makes me worse. But my life is so tiny, so limited, so enclosed now. So painful.

And I have already grieved for this a million times.

But I am still sick. And there is no light at the end of the tunnel. Jusr more pain. More loss. More limits.

There is so much more I need to be doing. I am so sick of being sick of this.


Tech Dreams

Bank_pneumatic_tubesFile this under dreaming.

When my symptoms are bad, I can’t really take the bus. I can’t drive either. I haven’t actually got my driver’s license over here (I mean, I *do* know *how* to drive) first because I didn’t have the money for a car and walking/bussing wasn’t a problem. I started the process and took my written test, but didn’t get around to finding a driving school for passing the driving test. And anyway, by the time I really needed to drive, I didn’t feel like I could function to drive.

So when I run out of something at home, that leaves spending loads on taxis or a full grocery order. For some things, when I’m feeling just enough up to it, I can brave the walk to the other end of my road and back for some groceries. But for a lot of things, with my 1 million food sensitivities, I have to go all over town (or a waitrose order) to find stuff that I can eat (that also actually tastes good and is easy to prepare). I was just thinking, as I poured out the last of my outrageously priced wheat-free, oat-free, colon blow rice puff/sunflour seed/linseed/”vine fruit” muesli….wouldn’t it be super techy awesome to have some sort of OrderNow TM barcode scanner that ordered just the things you ran out of, when you needed them. You know, without the £60 spending minimum and having to plan a day or two ahead for a delivery slot. I’m running out of individual random stuff waaaaaay before my next full shop is due. All the time. It sucks. It’s always on a housebound day. Or week. I really don’t wan’t to spend for a taxi for one box of cereal. The cereal is already super overpriced. But it’s currently my favorite thing when I cannot connect enough thoughts to actually cook a meal from scratch. Or even manage to heat up and then butter an overpriced gluten-free crumpet. And, really, when my brain *is* working enough to cook anything, I’d rather be spending that time doing something like blogging or writing up. So if we could get on that OrderNow scanner right away please? Maybe it could deliver to my kitchen via one of those air-suction tubes like they used to have at drive-up banks when I was a kid. Retro.

migraine · Uncategorized


In the week after Christmas, I developed a fun new symptom. A mild eye twitch. About a week later, it had ramped itself up into a full blown eye spasm, which would make my top and bottom eyelid hard to see out of and my eyebrow appear to be drooping and my cheek smiling. With it came increased confusion and word-finding problems. The best bit about word finding problems is how it makes it nearly impossible to accurately describe one’s symptoms to a doctor when you can’t make the word for what you’re feeling, or the medicine you took, etc, come out of your mouth. My other half finally made me go see a GP when I was having pain like someone was trying to push their way out of my head from behind my eyeball, which would then turn into a headache which would then make me tense up and my neck would join in.

Not knowing what to make of these symptoms, which are outside of the *normal* everyday pain of ME that I experience, of course I want to go to the GP and A) find out what it is and B) make it go away. I tend to avoid GPs at all costs because 1) no one educated likes being treated like a fat, uneducated, hypochondriac, whiney baby and 2) it is hard to educate someone about a subject that you are well versed in (your chronic illness) when you have word-finding problems and 3) body shaming happens every time and 4) they don’t actually help you and 5) all of the above can often leave you feeling hopeless and suicidal afterwards.

I didn’t get to book in with the GP that I have gotten to know, who avoids body shaming and seems to know anything at all about ME because I wanted my husband to come with me for moral support and had to book on a Thursday. I got a locum who looked about 15. I told her that my eye muscles were spasming painfully. She said “it’s twitching?” I said, well, no, it *was* twitching and now it’s involving my whole face and keeping me from opening it full stop at times and closing it at others, which I would call a spasm. “Twitching then” she concludes. After being told this is perfectly normal (if it’s not a sign of something dangerous or worrying fair enough, say that, but stop calling it normal, how is my whole face painfully scrunching into a ball on one side so that I cannot see *normal*??) and it usually goes away after a few months. A few months. But after further consideration she thinks it may be migraine, which I do also get, but hadn’t thought of because I wasn’t getting any major aura, and I hadn’t normally ever experienced my whole face attacking me during a migraine before. But it made sense of the severe confusion, forgetting my own street name, not being able to tell taxi drivers how to get where I needed to go, worsening of word-finding issues, forgetting what I was doing *while* I was doing it, and generally looking like a zombie. So off I went with a triptan prescription (but only after giving her a gentle lecture on safety for ME patients after she had suggested that a bit of “gentle” swimming can help cure “things like ME”).

A week of triptans and no better, and I get one of the old hands on a phone appointment. I tend to avoid him because he totally misdiagnosed my bout of meningitis a few years ago as just another OA and/or ME symptom flare (I ended up in an ambulance and hospital a few days later that time). But, miracle of miracles, he was actually a reasonable partner in my healthcare this time. Maybe because he couldn’t see my fatness over the phone he took me seriously? He listened when I said that in general, aside from some flares, I had been controlling the pain and avoiding pain killers and that this was NOT my normal everyday ME myalgia. And he listened!! I emphasized that I knew I had a clean MRI a year ago and I was sure it wasn’t something like a tumor and that my concern wasn’t “oh crap hypochondria” but rather “this hurts more than normal make the pain stop.” And he listened and agreed! And I said I’d looked on the migraine trust website and looked at the different side effects and he actually listened and agreed to let me try the one drug with the least shitty set of side-effects for me! He actually listened and didn’t send me away with just, well, nothing, because I didn’t want to take the one that causes weight gain or the one that causes low blood pressure. A GP actually listened. Tiny minor miracles of the chronic illness day.

And it seems to be working a little bit. We’re only four days in, so I’ll shut up now, because lord knows how many things I’ve tried that I think might maybe possibly be working but no not really, just random variability of symptoms. I have actually gotten a bunch of stuff done today, including an actual blog post (hello), but I haven’t actually left the house or anything yet in the past four days. I have to go pick up the rest of my prescription, do school run, go to Parent Teacher night tonight, get some real (i.e. thesis) writing done tomorrow, and see my supervisor. So we shall see. Wish me luck.



Medically Unexplained Assumptions


Jean Martin Charcot was a pathfinding 19th century neurologist with a particular genius for anatomical dissection and postmortem diagnosis, but he may be best known today for his work on ‘hysteria’. In his book Freud, Richard Webster describes Charcot’s ‘classic case of neurotic hysteria’, in which a man named Le Log—–  who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage, was deemed by Charcot to be suffering psychological trauma from the accident. As Webster suggests in his book, such a patient today would be recognized as having ‘a case of closed head injury complicated by late epilepsy and raised intracranial pressure’. But the concept of internal head injuries was not understood at the time, so because Le Log—– had no visible signs of injury, Charcot assumed that the symptoms must be psychological. The poor man was misdiagnosed with ‘neurotic hysteria’ and…

View original post 1,630 more words


PACE Trial’s Forbidden Fruit: Is The Data Really Poisonous?

The Self-Taught Author

Duchesnea_indica1 A Mock strawberry: No it’s not poisonous, despite what you may have heard. Just tasteless. A freedom of information (FOI) request was submitted to Queen Mary University London (QMUL) in 2014 for a small portion of the PACE trial data (below I go into detail about precisely what data has been requested, and you can skip ahead if you want to). QMUL refusedthis request. The case went to the ICO who agreed with the requester and ordered QMUL to release the data. QMUL haveappealed this decision andthetribunal will take place in 2016 with the court deciding whether QMUL have to release the data, or not. The outcome is impossible to predict, but it’s important. I wrote previously about why we must be allowed to see the data.

Here is my opinion: For ME/CFS, this tribunal case is one of the most important things that will happenin the whole of…

View original post 1,658 more words


PACE Trial’s Forbidden Fruit, Part 3: Charities Must Echo Patient Calls For Data Release

The Self-Taught Author


I recently wrote about the Freedom of Information (FOI) request that the Information Commissioner upheld, ordering Queen Mary University of London (QMUL) to release the data requested from the PACE trial. I provided an example of exactly what data was requested to demonstrate that the release would not include any personal identifiers of patients from the trial. I also highlighted the scaremongering of the PACE authors and their institutions that is misleading people into thinking the data is personal data when it is not. Before that, I wrote about why we must be allowed to see the data.

QMUL released a statement about the case, stating that they were seeking advice of patients, but they have not explained how this advice is going to be sought or under what conditions.

Many ME/CFS patients will obviously want to have their opinions taken into account. It is clearly a matter that patients…

View original post 956 more words