“The best way I can describe how noise, touch, sound & chemicals feel to me is, they feel ‘raw’—like the nerve pain from a toothache… even the slightest stimulus feels overwhelming & intense.” buff.ly/3RNCp4K A Journey Through the Fog #hypersensitivity #MECFS #allodynia #hyperacusis

I've had a new carer recently & I reacted badly to her laundry detergent both visits. When I explained this to her, her immediate response was: what detergent do you use? What is safe for you? She's now only going to use 'safe' products. Such a lovely, kind response #MECFS #MCAS

Today we remember & honour those with severe or very severe ME. ⠀⠀ Thinking about all the people who are severely affected - you are not alone 💙 ⠀⠀ ⠀⠀ And all the people we have lost to this cruel illness - you are not forgotten 💙 ⠀⠀ #SevereMEDay #MECFS #Hope

"I struggled with overwhelming fatigue and flu-like symptoms for years before I was finally diagnosed with ME. Every GP I visited, begging for help, blamed my poor physical health on depression and anxiety" Read here👇 metro.co.uk/2021/10/29/chr… #SevereME #MEAwareness #MECFS

My thoughts on severe ME awareness day. #SevereMEDay #SevereMEWeek2022

“The best way I can describe how noise, touch, sound & chemicals feel to me is, they feel ‘raw’—like the nerve pain from a toothache… even the slightest stimulus feels overwhelming & intense.” buff.ly/3zWdwvr A Journey Through the Fog #MECFS #hypersensitivity #allodynia #hyperacusis

The DecodeME study is now open. You can take part now by visiting decodeme.org.uk/portal and signing up. You can read our full statement about today's launch here decodeme.org.uk/statement Thank you for your support. #pwme #decodeme #decodmestudy #MECFS

#DecodeME participants also asked for a DNA sample will receive a spit kit in the post soon.     It may take some time for the many kits to be sent out. Don’t worry as they are on their way.    If you have received yours, share your experience: #SpitToDecodeME

As the 1st researchers to study autophagy in ME/CFS, not only did we find this process dysfunctional, we also found a critical pathway involved in PEM. This finding might enable us to produce a drug for ME/CFS! Read on: tinyurl.com/yzwvcyra #mecfs #MEmousemodel #longcovid

“The best way I can describe how noise, touch, sound & chemicals feel to me is, they feel ‘raw’—like the nerve pain from a toothache… even the slightest stimulus feels overwhelming & intense.” buff.ly/3SmkT6C A Journey Through the Fog #MECFS #hypersensitivity #hyperacusis #allodynia

Here’s the #JoinIn info if you’re new to the gang. Remember to use capital J and I so that text readers can read it for blind folk. Also, don’t wait for someone to chat to you, click on the hashtag and jump in. Start chatting.

Kara was so talented & special - her music and story touched us all 💙 Kara’s dream was to raise £100,000 to establish a post-mortem facility for research into severe cases of ME. Listen to her beautiful music here: lnk.to/KaraJane Donate here: justgiving.com/fundraising/ka…

Today we share important news with you all: Kara’s death certificate has been issued, and it records myalgic encephalomyelitis as the underlying cause of her death.  Kara’s family wish to thank everyone for their incredible support this week.  karajanesings.com/2023/01/06/dea…

"We need a robust health system with well-paid staff, & a new focus on the research & treatment of post-viral illness. Not as a psychosomatic phenomenon, but as a severely disabling physical disease that can & does kill people." Me for The Unwritten theunwritten.co.uk/2023/01/18/kar…

Maeve O'Neill died at 27 in October, 2021. Her death certificate cites ME. An inquest into the circumstances and the actions--or inactions--of the NHS in Devon should take place this year. Here's my account of what happened. codastory.com/waronscience/c…

“If a friend only sends an emoji as a response they are not being rude, they’re exhausted… If I’m not keeping in touch, or don’t always reply—it’s not because I don’t want to or don’t care. Sometimes I just can’t.” buff.ly/40HjmNb A Journey Through the Fog #chronicillness #chronicpain

May’s very special issue of British Vogue is on newsstands from today. To see disabled women in the pages of Vogue will be genuinely moving for a lot of readers. Huge congrats to Sinéad Burke for all her work.

We’ve reached 10,000 DNA participants! We still need more so please help us spread the word about #DecodeME to #PwME Take part here if you haven’t already: rb.gy/hc04i #MECFS

What do you consider the single best link explaining ME/CFS isn't psychosomatic?

Can anyone apart from spam bots help?