I was diagnosed in 1989, I then got covid, and have been worst ever since. Now at age 56 it's a challenge every day, the symptoms are so varied and there is ongoing research Decode ME but all the news articles are void of real information.
I am so glad to hear that ME is being discussed on TV of course that doesn’t mean anything but it is a little bit of exposure. ME is one of those illnesses I had heard of of but was utterly ignorant about, until April 2021 I was an exceptionaly fit competition cyclist and then I had a vaccine and 20 minutes after that I rapidly developed shattering symptoms, my doctor has me down as long Covid I now meet all the NICE criteria for ME so I’ve learned the hard way about pacing I’ve not been able to return to work & life is very limited. My heart goes out to ALL those with long Covid and ME officially recognised or not and you would think that with so many people off work long term sick any government would start to recognise the issue, but no we just have to keep voting them out of office until they realise!
Sadly, ME/CFS has been around for a very long time, long before covid. Sadly, the research despite the current long covid, research is still slow. Have to wonder why?
I've had ME since 1999. The illness was devastating enough; having to endure the disbelief of many doctors made matters worse. I had to leave my profession and was bedridden, then housebound, for many years. I've finally been able to have more of a life due to the off-label use of a drug. And, yes, if ME had been taken more seriously in the past, we'd been in a much better position to now to deal with long Covid. Because of my horrible experience with ME and how I was treated, my regard for the entire medical profession has plummeted.
Which kind of Off Label drug have you taken. I have Post-Covid since march 2022. Since May 23 I am housebound, because I had a terrible crash. Sorry, my English ist not so good.
@@sylviaschindler946 Your English is fine. I'm so sorry you're having to deal with Long Covid. I'm not sure whether the drug I'm on has been used for Long Covid, even though there's so many similarities with ME. But, for what it's worth, I've been taking Abilify (2 mg). I think it might be very difficult to get it prescribed in other countries (I'm in the U.S.).
I've been living with ME for decades and have only recently been diagnosed. The struggle is real.
Great to see ME/CFS covered in national news with input from specialists such as Dr Weir. Thanks for posting
I was diagnosed in 1989, I then got covid, and have been worst ever since. Now at age 56 it's a challenge every day, the symptoms are so varied and there is ongoing research Decode ME but all the news articles are void of real information.
Thank you for giving attention to ME.
I am so glad to hear that ME is being discussed on TV of course that doesn’t mean anything but it is a little bit of exposure.
ME is one of those illnesses I had heard of of but was utterly ignorant about, until April 2021 I was an exceptionaly fit competition cyclist and then I had a vaccine and 20 minutes after that I rapidly developed shattering symptoms, my doctor has me down as long Covid I now meet all the NICE criteria for ME so I’ve learned the hard way about pacing I’ve not been able to return to work & life is very limited.
My heart goes out to ALL those with long Covid and ME officially recognised or not and you would think that with so many people off work long term sick any government would start to recognise the issue, but no we just have to keep voting them out of office until they realise!
Sadly, ME/CFS has been around for a very long time, long before covid. Sadly, the research despite the current long covid, research is still slow. Have to wonder why?
I've had ME since 1999. The illness was devastating enough; having to endure the disbelief of many doctors made matters worse. I had to leave my profession and was bedridden, then housebound, for many years. I've finally been able to have more of a life due to the off-label use of a drug. And, yes, if ME had been taken more seriously in the past, we'd been in a much better position to now to deal with long Covid. Because of my horrible experience with ME and how I was treated, my regard for the entire medical profession has plummeted.
Which kind of Off Label drug have you taken. I have Post-Covid since march 2022. Since May 23 I am housebound, because I had a terrible crash. Sorry, my English ist not so good.
@@sylviaschindler946 Your English is fine. I'm so sorry you're having to deal with Long Covid. I'm not sure whether the drug I'm on has been used for Long Covid, even though there's so many similarities with ME. But, for what it's worth, I've been taking Abilify (2 mg). I think it might be very difficult to get it prescribed in other countries (I'm in the U.S.).