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M.E. and LONG COVID

(31 Posts)
Sparklefizz Mon 19-Jun-23 10:38:33

To all those of us who suffer with either M.E. or Long Covid (34 years of M.E. myself, and friends with either M.E. or Long Covid), this is a petition asking for more research to help all of us which you may want to sign and share. We need help.

petition.parliament.uk/petitions/630551?fbclid=IwAR2Ovz_TB9K6igOT5A_WE3LMGzuCWPu9GNJ71FoS3F2FLW_HRA-SjYrYhCk

Aldom Mon 19-Jun-23 10:43:00

Signed. A very worthwhile petition. Hope it brings results.

Aldom Mon 19-Jun-23 10:43:54

Also shared.

Sparklefizz Mon 19-Jun-23 10:48:17

Thank you Aldom. Very much appreciated.

MiniMoon Mon 19-Jun-23 10:50:06

Signed.

My daughter and sister both suffer from post viral fatigue syndrome.

Chardy Mon 19-Jun-23 15:01:01

For those families with a loved one suffering from ME, Chronic Fatigue Syndrome, Long Covid or Post Viral Syndrome - we know how awful it is to feel there may be no future. These illnesses may last a short time, years or forever. It may mean the sufferer can't leave the house, or even leave their bed. Meanwhile the govt says the sufferer should get back to work, the Telegraph and Jeremy Vine wants to quantify how much the disabled are costing individual tax payers. And others, including those who should know better, imply these diseases don't exist.

If we'd had research into ME before the pandemic, those with Long Covid would have been in a much better position.

Please sign.

Whiff Mon 19-Jun-23 15:13:23

Signed. There is also a petition to get healthcare professionals to approve PIP to fast track the process. But I don't know how to do a link. If you look at Google and scroll down there is a picture of some nurses and a link to the petition.
I have been waiting a year to get a tribunal date.

nanaK54 Mon 19-Jun-23 15:18:57

Signed and shared

Sparklefizz Mon 19-Jun-23 17:05:07

Thanks everyone. This petition only has until the 7th July to get enough signatures. I wish it had come to my attention earlier but it didn't. Unfortunately for many people with M.E. or Long Covid, signing petitions is bottom of their To Do List.

Chardy Thank you so much for what you have said.

Squiffy Mon 19-Jun-23 18:06:13

Signed and shared.

Thank you for starting this thread Sparkle. The research could be so useful for all sorts of ailments. It will also make more people aware of the problems these conditions cause.

I’ve had ME for over 25 years and, like so many, had to run the gamut of ridiculous, so-called ‘medicals’ in order to get ESA, only to be turned down. They just didn’t know how to deal with fluctuating conditions or the payback after any exertion. The Tribunal took just a few minutes to overturn the original decision!

Wyllow3 Mon 19-Jun-23 20:57:00

Signed, its so hard to get help.

Iam64 Mon 19-Jun-23 21:00:07

Signed

choughdancer Mon 19-Jun-23 21:52:53

Signed. Thanks Sparklefizz for posting it here. I've had M.E. for about 20 years, and my very fit and active daughter had Long Covid for two years and still isn't completely back to normal

Greenfinch Mon 19-Jun-23 22:52:35

Signed. DiL had ME for most of her teenage years. She has recovered but fears that catching covid could bring about a relapse.

pinkquartz Mon 19-Jun-23 22:58:20

I have signed and shared,

Have been ill with this for over 30 years. Made huge attempts to regain some health but Covid knocked me back a long way.

DamaskRose Mon 19-Jun-23 23:01:09

Signed

Skye17 Mon 19-Jun-23 23:14:33

Signed and shared.

Chardy Tue 20-Jun-23 13:47:12

Whiff

Signed. There is also a petition to get healthcare professionals to approve PIP to fast track the process. But I don't know how to do a link. If you look at Google and scroll down there is a picture of some nurses and a link to the petition.
I have been waiting a year to get a tribunal date.

Is this the one whiff
petition.parliament.uk/petitions/639467

Sparklefizz Wed 21-Jun-23 18:57:30

Thank you everyone who has signed and shared. We need all the help we can get.

Sweetpeasue Fri 23-Jun-23 12:02:10

Signed. So many living with this debilitating illness and now long covid.

Cressida Tue 27-Jun-23 17:32:38

My daughter was diagnosed with ME in 2001 and is taking part in DecodeME study. She answered a questionnaire and a few weeks later was sent a DNA kit.

As they still need more people for the study I started a thread but another poster reported it.

Sparklefizz Tue 27-Jun-23 17:35:42

That's a great shame Cressida. Goodness knows why it was reported! Grrr.

I know of the study through one of the ME Groups I belong to, but can't join it because I have a number of other conditions which make me exempt. Good luck to your daughter.

pascal30 Tue 27-Jun-23 18:01:03

signed

Squiffy Fri 30-Jun-23 12:28:27

Bumping this as the deadline is 5 July 2023.

FannyCornforth Fri 30-Jun-23 14:04:40

Signed.
Thanks for the bump Squiffy, I hadn’t seen this smile