I'm a physiotherapist. Seeing the impact of Covid on survivors will haunt me forever

I'm guessing that she hasn't seen any severely affected ME patients then...
@PhysiosforME , one for you guys, in case you aren't aware of it.

https://www.theguardian.com/society...t-seeing-impact-covid-survivors-haunt-forever

 

Yep, it's a very binary view.

So many contradictions in society's view of health.

Before medicine became more accessible & advanced it wasn't unusual for people to be chronically ill. That was just life.

These days for an illness to be serious you have to be at risk of death. Yet even though medicine can save more lives than ever before it cannot always restore full health so, if anything, the proportion of people living with a chronic illness or disability rises. A side effect of medicine, if you will.

Society's "head in the sand" approach of not being more inclusive to those who can contribute as much as anyone else as long as they are allowed to do it a bit differently excludes much needed talent.

Others with chronic conditions are left not only unable to contribute at all but needing assistance with day to day life because chronic illness doesn't attract the same medical attention and urgency as critical illness.

The BPS cult and ideology serves to make the chronically ill even less visible. If something good were to come out if the pandemic it would be good to see a reversal of current attitudes to those who are chronically ill.

I'm not holding my breath though.

 

good points.

there are also those who need assistance with day to day life but cannot contribute as much as anyone else EVEN IF they are allowed to do it a bit differently.

because their disease population is persecuted to the point of no science. and because they get sicker because they cannot rest, are exposed to harmful treatments, etc.

example: whitney can't physically go to south georgia island and photograph the birds until his underlying disease is addressed. no doing it differently or being fruitfully assisted to do so until then. disability community please note.

 

I'm afraid it's a lot worse than that @Samuel. Though I am sure Whitney often wishes himself somewhere wonderful taking beautiful photos the neglect of this disease over decades means he can't so much as get a drink of water, shower, or speak to a friend by himself.

I wouldn't use the words lucky to describe anyone in Whitney's position but he does have supportive family. People who care for his needs and have dedicated themselves to speaking out and doing something about it.

What about all the others who are as ill, who don't have family who can help? Where are they? How are they being treated? They really are invisible.

There's a forum member on here who is completely bedbound and reliant on carers. They won't administer medicine which helps her because it hasn't been prescribed by her GP. There was a funding issue with her carers & the local authority were saying either accept less care or be placed in a care home. She disappeared.

There's a whole level below that's completely invisible even to us. Without any decent treatments, unable to prevent the state from taking over their care, they are left to the tender mercies of a social care system that doesn't recognize or have any understanding of the disease and how best to care for someone with it. I shudder to think what's happening to those people. With no one to speak up for them in the face of ignorance and neglect who knows what they're put through?

Edit spelling

 

Yes, @Invisible Woman, I know.

 

She's been a physiotherapist for a quarter of a century, and in all that time never come across an M.E. patient?

 

Not one she has given credence to I would imagine, as that is the default usually for pwME.

 

Thanks for the tag - I think COVID has been an eye opener for lots of clinicians in a lot of different ways.
We've had some really positive feedback to the couple of webinars we have done recently for the Chartered Society of Physiotherapy and to our Frontline article so really hope we are starting to get the message out there. Hopefully some good will come from this awful pandemic

 

@PhysiosforME, I noticed that the article said:

I wonder whether there could be harm in making the default assumption that every patient can "return to normal" if you just invest enough in their rehabilitation? Its laudable to want to aim high for your patients, but surely here are many factors contributing to a chronic condition, and only some of them are addressable through rehab?

My worry is that this is the very assumption that damages us - because we don't "return to normal", and so therefore don't fit the model of recovery through hard work and rehabilitative effort that is most satisfying to physios?

What is your view?

 

Ooh I could write a thesis on this! My least favourite phrase ever is "no rehab potential" I think (and it is just my personal opinion) that as a profession we are always trying to get the "best possible outcome" when we work with patients, but that certainly isn't always return to normal. You have hit the nail on the head about the range of factors contributing to a chronic condition though. I honestly think a lot of physios just don't know about ME and so are accepting of the GET noise. We are doing our best to change this!

 

This is what scares me personally. If i get covid & end up getting much much worse, there will be no one knowledgeable to advocate for me, i will be one of those people left to the mercies of social services. Ending up in a home or being erroneously sectioned. It terrifies me.

 

There seems to be growing awareness that some COVID-19 patients do not respond well to exercise. Here's an article in WIRED.

In patients with severe COVID-19 there is some reason to look for myocarditis, while others find reason to deny this. I need to caution those on this forum that by typical diagnostic thresholds ME/CFS patients do not have "heart problems". My suspicion is that endothelial dysfunction is common, but I can't presently back that up. I also suspect that many have a form of diastolic dysfunction which cardiologists generally ignore because it won't kill patients in the next three years. Some ME/CFS patients can have cardiac output in a range typical of heart failure, but will not otherwise meet clinical criteria for heart failure.

Don't try to tell a doctor you have heart failure; you will lose credibility. You probably have significant exercise intolerance, and respond poorly to exercise above anaerobic threshold.