The Prepping Thread - A Newer Beginning ;)

littlemoney

greenbee said:

@Si_Clist - even those of us who have had it mildly are suffering from what's now being called 'post-Covid fatigue'. I had a formal diagnosis earlier this week, have tests booked for next week after which we'll discuss a treatment and rehab plan. Medics are expecting an epidemic of chronic fatigue starting around now so we'll be dealing with that as well as further waves of virus. Chronic fatigue is hugely under-researched and under-resourced - hopefully that will change, but for the moment it means we'll have a lot of people with a range of symptoms that mean they are exhausted and can't function properly and no proper treatment because we won't really know what the underlying cause is. 

I am sorry to tell you that currently there is  no treatment for Post viral fatigue/ME as the 250,00 suffers in the UK know and very little money has been spent on researching it. The basis current advice is to pace yourself to manage your energy levels which can make for a very  restricted life and pay the price if you do too much one day and then taking days to recover from doing something you previously took for granted.

Perhaps now it will be taken more seriously with fully funded research, rather than sufferers being told it's all in your mind and to pull your socks up and get on with your life. Historically it is a diagnosis that was given when all tests had returned normal results and the medical professional didn't know either why you haven't made  full recovery or what to do about it. Sorry to be so depressing about the issue.

greenbee

littlemoney said:

greenbee said:

@Si_Clist - even those of us who have had it mildly are suffering from what's now being called 'post-Covid fatigue'. I had a formal diagnosis earlier this week, have tests booked for next week after which we'll discuss a treatment and rehab plan. Medics are expecting an epidemic of chronic fatigue starting around now so we'll be dealing with that as well as further waves of virus. Chronic fatigue is hugely under-researched and under-resourced - hopefully that will change, but for the moment it means we'll have a lot of people with a range of symptoms that mean they are exhausted and can't function properly and no proper treatment because we won't really know what the underlying cause is. 

I am sorry to tell you that currently there is  no treatment for Post viral fatigue/ME as the 250,00 suffers in the UK know and very little money has been spent on researching it. The basis current advice is to pace yourself to manage your energy levels which can make for a very  restricted life and pay the price if you do too much one day and then taking days to recover from doing something you previously took for granted.

Perhaps now it will be taken more seriously with fully funded research, rather than sufferers being told it's all in your mind and to pull your socks up and get on with your life. Historically it is a diagnosis that was given when all tests had returned normal results and the medical professional didn't know either why you haven't made  full recovery or what to do about it. Sorry to be so depressing about the issue.

I've already been given a lot of material on the subject - I know the chances of there being any treatment are slim if the tests show everything as normal. As you say, hopefully there will be more research given the numbers expected to develop CFS following on from post-Covid fatigue. There are a few specific things that they are looking at more closely in post-Covid cases.

I certainly haven't been told that it's all in my mind and to get on with life. I was told very clearly that the diagnosis is CFS unless the tests flag up another cause (unlikely given the earlier covid diagnosis), and as soon as the clinical diagnosis is confirmed we'll discuss next steps - including possible trials and a referral to the local rehab centre. My practice seems to take it pretty seriously as they fully fund the rehab programme, and also know I'm happy to participate in trials and studies (they regularly do my blood tests for the ones I'm already involved in). I'm also lucky to be able to work from home and pretty much manage my workload and working time myself (I'm measured on outcomes not hours), as well as earning enough to be able to pay for cleaning/gardening help if I need it. Ironically life under lockdown is a lot less demanding and stressful for me than my normal work schedule, so the fact that I'm not flying 6-10 times a month means I'm already taking things a lot more slowly than normal!

thriftwizard

Greenbee, you are very lucky in your surgery! Having had ME/CFS before it had been "invented", following a bout of Glandular Fever, the doctors informed my mother I'd had a "breakdown" - their catch-all diagnosis for anything they didn't understand & couldn't see or measure. And when I had it again when the kids were small, again following a vicious & long-lasting sore throat bug, I was just told to rest & take more exercise. Quite how I was supposed to achieve that with 5 kids aged from 9 down to 2, and with OH working shifts that included nights, no-one ever explained to me. I suspect it lasted twice as long (2 years before the main symptoms - dizziness, exhaustion, wobbly legs, trigeminal nerve pains, blurred vision - subsided) as it would have had I actually been able to take it easy. I'm very relieved that the medical fraternity are at last taking it seriously.

littlemoney

greenbee said:

littlemoney said:

greenbee said:

@Si_Clist - even those of us who have had it mildly are suffering from what's now being called 'post-Covid fatigue'. I had a formal diagnosis earlier this week, have tests booked for next week after which we'll discuss a treatment and rehab plan. Medics are expecting an epidemic of chronic fatigue starting around now so we'll be dealing with that as well as further waves of virus. Chronic fatigue is hugely under-researched and under-resourced - hopefully that will change, but for the moment it means we'll have a lot of people with a range of symptoms that mean they are exhausted and can't function properly and no proper treatment because we won't really know what the underlying cause is. 

I am sorry to tell you that currently there is  no treatment for Post viral fatigue/ME as the 250,00 suffers in the UK know and very little money has been spent on researching it. The basis current advice is to pace yourself to manage your energy levels which can make for a very  restricted life and pay the price if you do too much one day and then taking days to recover from doing something you previously took for granted.

Perhaps now it will be taken more seriously with fully funded research, rather than sufferers being told it's all in your mind and to pull your socks up and get on with your life. Historically it is a diagnosis that was given when all tests had returned normal results and the medical professional didn't know either why you haven't made  full recovery or what to do about it. Sorry to be so depressing about the issue.

I've already been given a lot of material on the subject - I know the chances of there being any treatment are slim if the tests show everything as normal. As you say, hopefully there will be more research given the numbers expected to develop CFS following on from post-Covid fatigue. There are a few specific things that they are looking at more closely in post-Covid cases.

I certainly haven't been told that it's all in my mind and to get on with life. I was told very clearly that the diagnosis is CFS unless the tests flag up another cause (unlikely given the earlier covid diagnosis), and as soon as the clinical diagnosis is confirmed we'll discuss next steps - including possible trials and a referral to the local rehab centre. My practice seems to take it pretty seriously as they fully fund the rehab programme, and also know I'm happy to participate in trials and studies (they regularly do my blood tests for the ones I'm already involved in). I'm also lucky to be able to work from home and pretty much manage my workload and working time myself (I'm measured on outcomes not hours), as well as earning enough to be able to pay for cleaning/gardening help if I need it. Ironically life under lockdown is a lot less demanding and stressful for me than my normal work schedule, so the fact that I'm not flying 6-10 times a month means I'm already taking things a lot more slowly than normal!

You are indeed in a very good and secure starting position and I very much hope you will be more fortunate than those already with the Post  Viral Fatigue/ME label who have been left to exist, not live, for many years. Perhaps something good will come out of covid19 with better solutions which will be good for existing Post  Viral Fatigue/ME suffers if they manage to survive covid19 as they tend to pick up viruses much more easily than "normal folk" and it lasts much longer and have a much greater impact on them so covid 19 is very bad news for them but they do not qualify for any shielding support measures so are forced to go out shopping.

3secondmemory

I belong to a group called Missing Millions - People who can’t take part in every day is a society and activity because of ME/CFS

We are tired of being fobbed off with GET and CBT - much like the whole COVID-19 approach, you’ll be given misleading information and, if you don’t make progress, it’s hinted that you’re not ‘trying’ hard enough 🙁

Best of luck

needmoney

Not sure if this is the right place to ask but I'm getting my first delivery from T*sco today and the email said your delivery will arrive WITHOUT BAGS.

Does this mean I will have to repack them into my bags at the door step as I am still self isolating. Their help page says groceries will be packed in bags because of covid. Does anyone have experience please?

longhill

Hi not sure on tesco but asda has been coming in bags in thr lock down

greenbee

I haven't been given any misleading information re. Covid. I've been asked a lot of questions all the way through, with medics being very clear that this is new and they're learning. So a lot of listening has been going on. My GP has had it (at roughly the same time as me), and her partner is taking part in one of the vaccine trials following an -ve antibody test.

The conversation this time wasn't, as I've heard with others 'oh well, we don't know what's wrong with you so we'll say it's CFS'. It was more 'your symptoms indicate chronic fatigue, so let's rule out anything obvious and then work out what's going on and what might help'. I know I'm lucky in my GP, but I guess they know I rarely bother them unless I have to, and I'm a long-term patient with two consultants who I can self-refer to as well as being involved in various long-term studies, so I know how this kind of thing works and I'm not expecting miracles. It's likely that any adaptations I need to make will be similar to those that were necessary before we found an effective solution to my ongoing long-term condition (it took about 5 years for treatment to finally stabilise), so I know I can do it - and I know it may take a long time. I appreciate the fact that they're taking is seriously, not just saying 'give it a bit more time' or 'are you getting enough exercise and using lockdown as an excuse to lie around eating chocolate all day!'. Reading too much about post-covid gets a bit depressing with all the talk about organ damage, so I try not to, but I'm aware that there could be a lot of tests coming up - not just for my benefit, but to get a picture of the overall impact on the population. 

needmoney

@longhill

Morries came in bags too. I did ring Tesco but they were no help weren't sure what my local store's policy was.

Nargleblast

My Tesco delivery last week was supposed to be without bags but turned up bagged. I think they have suspended bagless deliveries for the time being, as it is easier and quicker to deliver the stuff and go when it's all in bags.