Fluctuation, perception and more PACE trial ridiculousness

So you might remember back in February, I posted an entry called Someone at the M.E. Association said something accurate and wonderful about the PACE Trial. Today I found, through an online friend with M.E., another pretty shocking piece of evidence that the PACE trial is not the great shining beacon of hope, recovery and reliable science that it is so often presented as.

If you have 13 minutes and 5 seconds free right now, please watch the video above from MEAnalysis on YouTube. It talks about how the measurements for recovery (sorry, I mean “recovery”) are based on vague questionnaires where the slightest improvement in score (or, weirdly, a score actually getting worse) is presented as proof of the effectiveness of CBT (Cognitive Behavioural Therapy…yep, being presented as a cure for a physical illness). It also discusses the absolutely shocking manner in which results were manipulated to give a false impression of health, improvement and ‘recovery’. I knew the PACE trial was a little bit dodgy, but I genuinely had no idea it was quite this ridiculous.

M.E. is a condition where the severity of symptoms fluctuates. I’ll use myself as an example by comparing what a really good week, an average week, a below average week and a pretty dreadful week are like for me…

A really good week
When I have one of these (they’re awesome and I’d like more, please!) I am able to work for about 20-25 hours from home, in shifts of mostly 4 hours but sometimes 7 hours. Work starts in the afternoon or evening, doesn’t involve any sort of physical movement and I can cope with sitting in an upright position with only a moderate amount of pain. I can tolerate having my computer screen at about mid-range brightness. Between two and four nights a week, I’m able to go for a walk after work and, providing there are no hills involved, I can walk for anything up to 5 miles. For real. Amazing, right? I’m also able to manage a trip to the supermarket and possibly an evening socialising. I can get up shortly after I wake up, am able to open the curtains right away even on a sunny day without the light being too painful, and can hold a conversation while there’s another source of sound in the room (like the TV being on, or music playing). I only need to take pain medication when I’m going to bed, not in the middle of the night or throughout the day, and only wake up once or twice during the night because of the pain in my back and legs. This is ALL completely reliant on being able to rest during the day when I need to, go to bed when I’m tired and wake up naturally when my body is ready to wake up. One long day, late night, early morning or experience of disrupted sleep throws everything into turmoil.

An average week
I’m able to work for about 16-20 hours from home, in shifts of four hours, in the evening. Again it doesn’t involve physical movement but sitting in an upright position will hurt pretty much continuously and feel very tiring. Wearing a headset and mic to use the phone feels restrictive and uncomfortable, the sound coming through it hurts my ears and if someone has a loud voice, it’s mentally jarring. I need my computer screen to be mid to low brightness or it hurts my eyes and causes headaches. I’m able to go out for a walk of maybe a mile or two, slowly, about once or twice a week and can manage a short trip to the supermarket and an evening or a weekend afternoon socialising, providing I don’t have to do anything else that day. It takes about an hour to be able to get out of bed after I wake up and I have to wait a while before I can cope with opening the curtains. Holding a conversation while there’s another source of sound in the room is difficult but manageable. I need to take pain medication before bed and also in the middle of the night perhaps two to four nights out of the week. I wake up numerous times throughout the night because of the pain in my back and legs. Again, this is all completely reliant on resting when I need to, going to bed when I’m tired and waking up naturally when my body is ready to wake up. One long day, late night or early morning results in a worsening of all symptoms and a real struggle to physically cope.

A below average week
I’m able to work about 12-16 hours from home, in shifts of four hours, starting in the evening. Although this doesn’t involve physical movement, sitting in an upright position is absolutely exhausting and my entire body aches the whole time. Wearing a headset and mic to use the phone hurts my ears and my head, and the sound coming through it is excruciating. Even with my computer screen at its lowest brightness setting, it is painful to look at and causes headaches. I can maybe manage one or two very short trips out of the house in a week, and only if I don’t have to walk very far and can go really slowly. A visit to the supermarket is overwhelming, exhausting and painful. Socialising is not an option. I takes about two hours to get out of bed after I wake up, and I need physical assistance with this. Holding a conversation while there’s another source of sound in the room is impossible. I need to be in near darkness to do anything that involves my eyes being open. I have to take pain medication before bed, during the night and possibly during the day. I do not get more than an hour’s sleep at a time because of the pain, and the sleep I do get is not restorative in the slightest. If I don’t get to rest when I need to, go to bed when I’m tired and wake up when my body is ready to, I literally can’t function.

A pretty dreadful week
I am physically incapable of doing anything beyond lying in a dark, quiet room. Everything hurts, severely and constantly, to the point where even medication makes very little difference. It is pretty much hell.

If you didn’t know me and were to observe me during a pretty dreadful week followed by even a below average week, you’d assume that there was some sort of recovery going on. If you were selective about when you assessed my symptoms and did so during a pretty dreadful week followed by an above average week, it would be easy to say “Before, you could only lie in a dark room and were unable to walk unaided. But now you can work 25 hours a week and walk for 5 miles at a time. You are getting better so whatever you did during this week has resulted in an observable improvement”. It would be easy to ignore the fluctuations for the sake of convenience or to support a theory that you were seeking evidence to support. Your assumptions would be wildly inaccurate.

I know this is getting to be quite a long post, but there’s another issue that I feel it’s important to address. That is the issue of subjective perception. Considering the scales used in the PACE trial are based on self-assessment questionnaires, I’m sure it would not be wrong to assume that an individual person’s mental state, based on anything from what kind of week they’ve had to how much they’re being told by an outside source that they should now be feeling better, would alter the results of that self-assessment. Let’s revisit those really good, average, below average and pretty dreadful weeks…

A really good week
I feel extremely positive and basically wonderful because I can actually DO stuff! I feel hopeful, excited and enthusiastic about everything I am able to do. My raised level of physical capability is a novelty and it reminds me of times before I became ill, even though my ability to do ‘normal’ things is still vastly reduced.

An average week
I feel pretty good because I’m able to do the things I need to do. As I tend to veer towards the positive in all situations because it’s my natural state of being, I celebrate my achievements (however small they may seem to a healthy person) and my mood is generally happy. If you were to ask me if I felt ‘better’ without mentioning that you meant ‘better compared to before I had M.E.’, I would probably grin and say yes.

An average week
I’m living my life and getting stuff done. Even though it’s difficult and I’m exhausted and in a lot of pain, I’m still making it through the week so I still feel like I’m getting somewhere and things could be much worse. There’s still a lot of positivity because there has to be, right?

A below average week
I might feel kind of down during a week like this but because I’m aware of just how much worse things can get, I can usually manage to muster up my game face and accept the challenges. Fear comes into play here because I’m not able to work as many hours, so I have less money, which can threaten my security in a big way (remembering that, at best, I am still only able to work part time from home). Raised levels of pain affect my emotional state too so I tend to feel fragile and more sensitive, but I remind myself that it isn’t like this ALL the time, so I can make it through the darker days and 4 o’clock dreads with only minimal amounts of anxiety attacks and hardcore crying fits if I have emotional support.

A pretty dreadful week
Basically just overwhelming fear and crying interspersed with moments of giving myself a severe talking to about how I should stop feeling sorry for myself, then feeling more useless because I’m not being my usual strong, positive self. I’m utterly terrified because I can’t work at all or earn any money. Because I find it difficult to form coherent sentences during these times due to my brain having forgotten how to do thinking and talking, I can’t express how I feel so it’s difficult to ask for emotional support. A sense of loss, of deep all-encompassing loss, smothers every moment. Dark days, people, dark days.

People often talk about how emotional state can affect physical symptoms, but don’t tend to consider so much how physical symptoms can affect emotional state. If you asked me about my illness on a really great day, I can guarantee that you would get a positive and hopeful answer focused on the good stuff. If you asked me on my worst day, you would get crying and swearing and more crying, if you even got a response. On an average day, it would be more like “It is what it is, and I’m dealing with it. There are so many wonderful things in life that I can still experience and so many more awful things that I’m thankful for not having to go through”. How different do you think my self-assessment would be depending on what day you happened to ask my to fill in a questionnaire? And how different would it be if I was enrolled in a program of ‘treatment’ focused almost completely on my emotional state where I was constantly being told that the ‘treatment’ should be making me feel better?

M.E. is a condition of ups and downs, swings and roundabouts, hopeful days and days when the bottom falls out of your world. On average over the course of a year, I tend to be able to function better now than I did when I first became ill. A lot of that has to do with the many huge and complicated ways I have had to alter every aspect of my existence to enable me to manage this illness as best I can. I have also had time to come to terms with the pain, exhaustion, cognitive difficulties, uncertainty and almost complete lack of support available (I’m talking about support from things like the medical profession and government ‘welfare’ system, not from friends and family). I have changed how I live, how I work, how I cope, how I think, how I feel…because I’ve had to. It has been a process. It still is a process.

Choose two different days, weeks or months to ask me how I am and I will most likely give you two different answers. They will both be true.

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5 thoughts on “Fluctuation, perception and more PACE trial ridiculousness

  1. Oh my, you’ve totally captured this perfectly! You’re just so right. On my good days, where I can have dinner with friends, or go to the cinema, write, walk with the dog and throw a ball etc. I feel great, I’m all “Oh I’m getting so much better, the M.E is so taking a back seat right now, I can live!”….a few days of living like that though and I’m right back to being stuck on the couch because the shooting pains in my legs mean I can’t put pressure on them, and I’m just too exhausted to even read…on those days I’m constantly on the verge of tears and my life is doomed!

    I truly find it quite disgusting that this country has so little to offer in regards to help with this illness. I understand syndrome type illnesses are difficult due to the myriad of symptoms affecting people in different ways, but surely CBT isn’t the only thing they can think of?!

    Anyway, enough rambling! Well done for a great post hunny and thanks for the video link!

    Auburn x

  2. Glad you liked the video, Tanya. One of the things that really bugs me is that, when they were touting for grants to pay for the study, they said that they would get all patients to wear an actometer for a week at the start and at the end (a pedometer, strapped to the ankle each morning to produce a fair idea of how active a person has really been). Then, once they had got the money, and started the trial, they added lots of new questionnaires and decided to drop the actometer. Coincidentally (of course) another study being carried out around that time on patients with ME/CFS found that improvements in questionnaires were not matched by any improvement on the actometer.

    They did however carry out a step test (well at least they said they were going to), but we haven’t heard anything about those results.

    If you would like to look at earlier (and shorter) videos on PACE: https://www.youtube.com/user/MEAnalysis/videos

  3. Reblogged this on annesuessblog and commented:
    The thing about ME is that it varies so much from person to person and even within the same person and is completely illusive to describe in general terms. However, this great blog does give a very good idea how it feels for a sufferer, bearing in mind that some people don’t even get good weeks and can’t work at all and may never manage to walk or walk very far, even on the flat. What everyone has in common is that it is devastating to a normal life, it’s just a matter of varying degrees and baffling to understand – even when you have it!

  4. I find it extraordinarily difficult to describe how it is to have this illness and I think you have done a great job with this blog Tanya. Unfortunately people mistake our cheerful, hopeful and optimistic disposition for wellness, but it is still our greatest ally and I think is the best way to cope and get the most out of life despite this horrible illness. Hopefully one day we will both find a way to recover and when we do, we will have the ability to truly appreciate good health.

  5. Pingback: M.E. Awareness Day and that time I climbed a hill | Momentary Solutions

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