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Exactly. The women I saw were finished treatment but before the long term effects were felt. I was frankly shocked how limited the range of movement was. Some of them with otherwise decent muscle tone. The school of yoga I learned from was oriented towards people with disabilities - the...

I spent a fair bit of time with cancer survivors practising yoga. On of the first things you notice with those who have had breast cancer surgery is the movement on that side is often limited. The range can be limited by quite a lot. Hitting a range of movement limit repeatedly during the...

Yep, I can understand that feeling. It also shows how wrong Sharpe is about groups being pessimistic. i feel like....can I be arsed fighting this B(P)S 'till the day I die then I log on here & spend some time hanging out with the members and think .... yeah, together we can do this. It...

You're probably right. He's certainly very quick to cash in though. We've already looked on in bemusement at his very public and emotive reactions during his "recovery". In hindsight it does look like setting the scene. " Recovery" is in quotes because I'm not sure what the appropriate...

BPSers are masters of circular reason and there was always the danger for long covid sufferers that they'd be stigmatised & marginalised in the same way as ME patients. If that fails then the obvious option is to just go ahead and stigmatise long covid sufferers and then use them to keep ME...

Here's another - and this is me being very cynical and it may not be true a) The guy claimed to be ill & I don't doubt he was. He claimed he was diagnosed with ME & I have no proof to the contrary. b) I do find it strange that with all the publicity about PEM and exercise and ME that Garner...

Exactly. If I have a criticism of ME charities in the past it has been that I think they're over optimistic & therefore potentially misleading about recovery. Even up until the last year or so I have read that most patients recover or at least improve in time. That's from both MEA and AfME.

I was told that the majority of people who develop ME and will recover do so within the first year. So, even if we ignore the fact that Garner doesn't seem to have experienced the post exertion difficulties (particularly with aerobic exercise) that is the hallmark of ME, he was well within the...

err.....why? I have lost people very close to me very suddenly, I mean literally dropped dead. I have also been made redundant - at a time when my industry was taking a downturn to boot so fewer jobs and more people going for them. Not covid related, granted. Both deeply unpleasant & pull...

I was once told that as there is no cure, no effective management treatment and no underlying pathology I should force myself to return to work part time to acclimatise myself to a working life with symptoms because I would always have symptoms anyway. I don't think it's entirely unreasonable...

Section 3 of the minutes that discusses Andrew Morris' involvement sounds good. " AM would initially form a steering group of 4-6 people to discuss issues of the day and then relayed to the wider group. This would keep the organization moving and members involved. We would identify a ‘core...

One thing I will note that for pwME and other debilitating conditions that restrict to the same level - we still face all the problems of daily life but no longer have access to typical safely valves & coping mechanisms. A fairly silly example might be I finally manage to clean the bathroom...

Personally, I think it's a stretch to class recognition that your emotional reaction is affected because you're in PEM and have overdone it as emotional coping. If anything, for me, I would class it as partly an issue with cognitive processing and partly an issue with how my body might react to...

One of the problems with diagnosis is the way the wider world views ill health and disability. I remember when I was first ill there was an awful lot of BPS guff around about diagnoses validating patients and making them feel better about themselves, despite my discovery that I was the only one...

When my ME was less severe I definitely used minor, simple physical chores as a distraction from those more complex and long cognitive tasks that @Hutan describes as high friction tasks. These days I tend not to have the capacity. I am also the type of person who hates having things hanging...

I think this is spot on. No matter how well you cope with a situation, eventually you adjust whether you like it or not (something BPSers struggle to get their heads around). I was devastated that my career & home was put at risk, years of hard work potentially down the drain with all my...

I know some say emotional lability is a symptom of ME. Personally, I find that to be a symptom of deep PEM. Most of my coping is very much of the problem solving type rather than managing emotions. Keeping my daily life running as smoothly as possible and adjusting my expectations of what is...

Propagated by other people who didn't question. If they knew the facts could be checked that easily then they were relying on other people not questioning. Which makes it look like there's a systemic problem of people not checking the most basic facts.

I was the one who was sick a lot as a kid. I flippin' hated it and would hide it for as long as I could. Often to be ratted out by my own sister. Even then I wouldn't go to the doctor willingly. The only reason I didn't just disappear off when they did make me an appointment was because I...

My take away from this reinforces that no matter the source ask for proof. This certainly cuts both ways & I think this is something we as patients try to do as much as possible here on S4ME. It is one of the reasons why I avoid writing letters or engaging directly. My memory is not good...