Trial By Error: Goodbye, Australia; and Two Updates After I posted yesterday’s blog about Professor Lloyd’s perplexing memory lapse relative to PACE, Tom Kindlon and I exchanged a few messages. He told me that he had written a letter to the Journal of Internal Medicine after Professor Lloyd’s inadequate mea culpa was published. That note singled out a letter by Stouten et al. and noted that it was not “unscientific” and had not included any “personal attacks” on the PACE authors. Then Professor Lloyd went out of his way to reaffirm the complaints against the other PACE-related letters cited by the editorial. ... Earlier this week I also posted a blog about the University of Bath’s shopping bag study. Today the link to the study on the university’s website no longer works. The following message appears instead: “We couldn’t find the content you were looking for. We’re updating our site and some information may have been moved or deleted.”
The request for volunteers for the shopping bag study looks to be still up on a helpfulpeeps.com message board https://www.helpfulpeeps.com/posts/376999167 (helpfulpeeps is a website that connects volunteers with people/projects that may need help. Seems a strange place to advertise for participants in a trial but perhaps this is a done thing... ?)
Btw, I feel like by posting that link above I may have made myself look like one of those mythical militant "activist" patients, scanning the internet looking to expose anyone whose research I don't like. I just want to explain... I searched around for more information about this study because I'm fascinated by where these kind of psychological theories around this illness come from and why they persist. I want to try and understand. (In my dreams, one day we have a kind of truth and reconciliation where researchers and patients sit down and really listen to each other!) I found that the lead researcher on this study has also researched perfectionism in people with anorexia. This does actually help me to understand a bit because I can see how, from the outside, my behaviour does sometimes look like I'm being hyper controlling in the way that someone with maladaptive perfectionist tendencies might be. For example, if I look well but I say that I can't carry a shopping bag because it will make me feel ill later or I cut a conversation short because I don't want to tire myself out. This does probably, from the outside, look like a very overblown response and like I'm trying to hyper-control everything. I can see how it might appear to be a response to anxiety and that by challenging these beliefs, I could feel better. However, the fact is that these behaviours actually do stop me from crashing later on - something I've learnt from many years of bitter experience. ME has actually quelled any perfectionism I used to have (I was high achieving and although I didn't suffer from anxiety I was ambitious and may sometimes have been perfectionist). ME has gradually taught me how to listen and respond to my body and not to any perfectionist thoughts eg. "keep going, just a bit more" etc etc. I will now soften into being ok with how things are in the moment rather than always trying to achieve something further because I know that when I push myself I bring on a lot of symptoms. I manage my activity so that I can do the most that I am able and this means sometimes looking a little strange so someone who doesn't understand the way ME works. So, the way I pace myself, which sometimes involve limiting things I enjoy to prevent a crash in the future, is actually a sign of self-acceptance and self-care - the very opposite of super controlling/perfectionist behaviour. It is a very healthy adaptive behaviour and in no way comparable to maladaptive perfectionism. I just wish I could sit down and have this talk with the researcher involved. The science is always going to be better when the real lived experience of people with an illness is taken into account. I think it's such a shame that time and money is going into pursuing these avenues.
Can i give you some unsolicited advice? Don't over think this, the militant crap is a dog whistle designed to deny reality and keep their house of cards alive. You can't talk them out of it and you can't disprove it because its not a thing, its their construct designed to keep their ideology from being challenged and defeated. That said common sense tactics make sense don't post falsehoods or threats since they will use that as ammunition. Beyond that don't let them stifle your curiosities or initiative because thats what they want to do, keep you from showing their malfeasance. It would not do much good, they have an ideology and nothing will break it, when someone is engaged in doublethink of their own volition you cannot pierce their bubble because that bubble is designed to resist anything they don't want to hear. The only way we will defeat them is to show the rest of the world they are selling a package of alternative facts
Whenever I re-read the 'unscientific and personal attacks' stuff it makes my blood boil. Shameful stuff from Lloyd, Van der Meer and the journal. So unfair you'd have to even consider that. It just shows how effectively we've been stigmatised. IMO so long as what's been posted is completely accurate, that trumps all concerns about terrorist patients.
It is incredible that clinicians with decades of experience of working with people with ME have not listened to their patients, that they have so little insight in the the subjective reality of their patients. Even if there were substantial psychological causal factors in ME, for which there is no evidence whatsoever, the simplistic false cognitions and deconditioning theory fails completely to describe the course of ME and subjective experience of patients.
I think we may be looking at the wrong discipline to analyse this. Psychology is useless.(bold) "The goal of qualitative phenomenological research is to describe a "lived experience" of a phenomenon. As this is a qualitative analysis of narrative data, methods to analyze its data must be quite different from more traditional or quantitative methods of research." ( Wiki) We need a discipline that can take the experiences of pwme and place it within a conceptual framework which enhances our understanding. ( if I could I would bold all that). So we need phenomenological research which lies within SOCIOLOGY. I haven't read a sociological analysis of ME ever. I did read a lot of sociology years ago. @Luther Blissett Do we have any sociologists on the forum? EDIT: apologies for not writing this with clear bold etc.
Angela Kennedy is a sociologist. I believe her daughter has ME. Here's a review of her book "Authors of Our Own Misfortune" : http://blogs.lse.ac.uk/lsereviewofbooks/2013/06/11/book-review-authors-of-our-own-misfortune/ Edited to add tag @Binkie4
Sounds like the perfect place to find people who can answer "yes" to the following two questions: 1. Do you sometimes feel tired? 2. Would you like to earn a tenner? Doesn't seem strange to me at all that they would go participant fishing on such a website - they've got two bites already.
