Whatever feelings one has about the MEA, I wouldn't blame them or CS for this. Perhaps in retrospect profiling him turned out to be a "mistake," in the sense of unhelpful, but no one could possibly have known at the time that he would turn around like he did.
In many respects MEA has been criticised for being too conservative (small c, not the party political kind) in their approach as a charity. People with ME would have liked them to be more forceful. The positive about the conservative approach is the lower risk strategy. But it seems the cautious approach doesn’t extend to every aspect of the project.
I was as thrilled as anyone that someone from Cochran crew was admitting, all be it in light of personal misfortune, that BPS ‘think yourself well’ ‘push through the exertion’ etc was not going to be the best strategy for them for recovery. From an infection with a virus particularly a very dangerous novel pathogen.
It’s true things could have gone another way following this U turn, another may not have followed soon after. Even expecting that it would, it would have been hard to predict anyone would take this reversion to type quite as far as PG has.
My objection is to publishing of a very prominent feature in an ME advocacy magazine of someone who had occupied a position of power, and had during this professional career been part of an organisation that hadn’t just done damage but was still causing damage to the lives of people with ME, mere months after this person had seemed to of changed their mind in this issue.
But as it happens also, it’s not the case that no one could foresee potential problems with PG, because people with ME of long duration had expressed their concern some on Twitter, one person I remember said to paraphrase somethings like, this is great but I can’t trust some from Cochran so quickly especially when they’ve only changed their mind over getting ill themselves, and that there worried about advocates investing so much hope and effort on him. A few other people said they wouldn’t trust him as far as they could throw him. This is more hazy so I can’t remember even approximately how people said this but I think it was quite a few people who said that they expected that he would recover, and they wished him well but weren’t sure if is change of attitude would survive recovery.
Still it’s doesn’t so much matter whether anyone predicted that his would return to form plus some or not. That was predictable, at least as a possibility, but it’s not the most relevant thing about the decision to profile him so soon.
Most relevant was a lack of caution and patience waiting to see which way he would go, after hopefully recovering. PG was still unwell earlier days unwell, and no one could know for sure where he would go on this one.
I am not blaming CS for failure to look into the future I am saying we people with ME could have done with not having one of our old foe given a pride of place big spead all over our miserable magazine just because he happened to find out his own body was actually not exempt from lingering COVID-19 symptoms.
It’s just not good enough. Wait until he’s either ill enough to have to be all in for his own good or happily recovered and holding charity events on our behalf because he’s a good egg and not all about himself. Or even just quietly getting on with his life and not publicly denigrating ME on the regular.
To be fair to PJ by his own account given at the time and since, he wasn’t feeling okay emotionally or in this thoughts post Covid, it’s known to cause serious psychiatric in some patients and mood issues for many or most, so I don’t know if it was fair even to host an interview him then. Mind you I’ll admit it might have been hard not to, he seemed to be seeking out opportunities for public attention then as now.
I would not be looking at this situation so unfavourably if it wasn’t for the fact that I don’t quite feel like it was a one off. One of those things mistakes that can just happen, much as it may look like that at first glance.
The reason I get so frustrated about this stuff is that MEA has a lot to offer CS in particular. The fact sheet resources are outstanding and CS always goes to great levels to be accurate and also to do the hard work of attempting to build bridges with people who are not easy to deal with. Because of this no matter how many times I get burnt, I can’t seem to help but put some level of trust into MEA, what that means is feeling disappointed and frustrated at pretty regular intervals because there are other aspects to MEA too.
I see the connection to PG as part of a continuum of the MEA connection to Peter Gladwell(?) and Sarah Tyson. Ordinary people with ME seem to much harder time getting the attention and having influence over MEA than do professionals with a somewhat chequered history and or present in relation to people ME and our welfare.
I don’t criticise CS for making a mistake it’s impossible not to make mistakes, I can’t get through a single day without making many. Even with a team in the context of work rather than individual life people can’t avoid all mistakes.
What I do resent is that professional people who have harmed us in the course of their professions get a louder voice in MEA than the people who have been harmed do. I am viewing this incident in context and not in isolation. There it seems more like a choice than a mistake.
