shauna chambers

@austinxwalker Huge opportunity with this. I work for a health tech company and my partner has severe ME. I’d love to help.. let’s connect

we're building the founding team in san francisco. looking for the world's best engineers and designers to solve this problem. if you make a successful referral to our next founding engineer, i'll give you $25K. DM's are open!

a few years ago i got covid and never recovered. i went from exercising every day to completely bedbound. lost 40lbs. in and out of hospitals for over 2 years. saw 20+ doctors. bloodwork came back normal. "you're probably just stressed from being a founder."

Great News!   OCTOBER 15TH WELSH SENEDD DEBATE ON SEVERE/VERY SEVERE ME   The Welsh Senedd Business Committee has timetabled Senedd Member @Adamprice’s Motion 8884 on Severe/Very Severe ME for a debate in the Chamber next Wednesday, 15th October - record.senedd.wales/Motion/8884 1/2

Senedd debate on severe M.E. confirmed for 15th October. @mabonapgwynfor I’ve sent you a constituent story & happy to help you prepare for the debate. Those with severe M.E. are suffering behind closed doors with no medical support. Help is needed urgently. #MECFS #severeME

@BottsieHicks @ValeBodi @OpenMedF @Ronaldw_Davis I agree on the link fitting, they did great presentations on both topics last Friday during a community symposium, hosted by Stanford Human Genome Centre. A recording will be released, which I’d recommend watching back 😊

@ValeBodi @OpenMedF Vale, in my non-medical mind, it seems as if @Ronaldw_Davis /Rob Phair's Itaconate Shunt Hypothesis fits so neatly with Robert Naviaux's Cell Danger Response Theory. The ISH switch is flipped and won't flip back, causing CDR. We're basically locked in a hibernative state. Right?

A central tenet of this hypothesis is that #MECFS is initiated when the itaconate shunt, normally a temporary response of the innate immune system, becomes a chronic impairment of the tricarboxylic acid cycle (TCA) in affected cells. ⁦@OpenMedF⁩ openmedicinefoundation.ngo/regulation-of-…

@500Miles4ME @Invest_in_ME Good luck on Sunday Rob! Thanks for your dedication 💙

Please consider donating to @Invest_in_ME by following this link to my #justgiving page - Diolch / Thank you! 💙 tinyurl.com/4rtpvc94 #pwme #myalgicencephalomyelitis #longcovid #myalgicencephalomyelitisawareness #wrexham10k

Only a few days to go & my prep has been stymied by 2 things – my knees! They’ve hurt me a lot so I’ve had to rest ‘em, nurse ‘em…slowly get back to jogging…just a K or 2…mustn’t mess ‘em up again…on Sunday they’ve got to carry me 10K in…90mins…it’s touch and go!

@DafoeWhitney Could it be due to lymphatic drainage? Key drainage points in the clavicle region, both sides. Is it even better when lying on the left? as the main thoracic duct is just below the heart on the left. 🤷🏻‍♀️

POTS question: I can think way more clearly when laying flat on my side. Specifically on my side. Flat on my back is the worst, I can feel the blood pooling in the back of my head - I feel sick from it. But I spend most of my waking hours propped up on a wedge pillow on my back. I often lay down on my side and my whole little life is totally clear and I feel engaged and everything I want to work on is clear in my head and feels easy to engage with. And then I sit up on my wedge pillow and my brain just goes to fog and I loose that ability to engage and cant' work on any of it. It's awful when I have insomnia because I lay down and have a million ideas but if I try to do any of them they disappear. Typical ME/CFS torture. Has anyone experienced this *much* improved mental clarity when laying flat on their side? Worst flat on their back and in between propped up on their back? It is certainly a blood flow issue but seems unique to what I've read. I'm consulting with doctors but am curious about patient experiences. Thank you ❤️ Whitney

@KarenLHargrave @PhysiosForME It’s a brilliant book!

I’ve been slowly making my way through the excellent book from @PhysiosForME. This table on PEM is 👌 I wish every healthcare worker would read this!

New from the US: Exertional Exhaustion (Post-Exertional Malaise, PEM) Evaluated by the Effects of Exercise on Cerebrospinal Fluid Metabolomics–Lipidomics and Serine Pathway in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome mdpi.com/1422-0067/26/3… #MEcfs #CFS

@mabonapgwynfor No probs, thanks for the quick reply. Will drop you an email tomorrow. Thanks!

@s_chambers92 Hi Shauna. So sorry but all sessions in both Tywyn and Barmouth are rammed tomorrow. If you email me we might be able to see what opportunities arise over the next few weeks or whether a staff member can start the ball rolling with your query mabon.ap.gwynfor@senedd.cymru Thanks!

Hi @mabonapgwynfor have you got any slots available for your surgery in Tywyn tomorrow?

Hi @LSRPlaid, have you got any slots available for your surgery in Tywyn tomorrow?

@AlexWhiteGB @jason_isaia That’s helpful, thank you!

@s_chambers92 @jason_isaia The lab I used in the uk does not do the test anymore but this is similar aonm.org/mitochondrial-… if you google dr myhill atp profile she has loads of good info on her website

Methylene Blue (MB), only been taking for around a month, not even got to half my adult daily dose yet and the changes are noticeable, still early days but here is my initial findings for me. Energy levels much improved, mitochondrial dysfunction significantly reduced, PEM>>

@AlexWhiteGB @jason_isaia Hi Alex, could you share where you got this test please?

@jason_isaia My mito issues were tested with an atp profile test, its a very specialised test that looks at things like atp recycling and why it might be impaired.

@linds_longcovid @SammyTimlin @OpenMedF Agree about @OpenMedF doing some great work co-ordinating and connecting research around the world. The @turnto_ai app is also a great way to see the volume of work being done and new research coming out weekly. @SammyTimlin

What are ME/CFS researchers even doing? What even is the plan?

@GoreLloyd Well said Emma. It’s stressful, upsetting amd relentless.

@BhupeshPrusty Really useful to see a breakdown @BhupeshPrusty. Thanks for sharing!

A ME patient asked me a curious question today. She wanted to know how I spent 300K of research funding provided to me by BMBF for 3 years. She was curious as 300K is a lot of money. I realized that the public needs to learn the nuances of the funding system and scientific research. I told her that 300K in research funding in Germany means 100K per year. Out of this 100K per year fund, 20K goes to the university as overhead costs. This budget is for the university. To do full-time research, we need to hire students. The annual salary of PhD students in Germany is roughly 48K. After deducting another 2K for publications or conferences etc, we have approximately 30K left for research. This particular project requires a costly experimental approach (mass spectrometry) for which we have a dedicated expense of 15K per year that goes directly to the proteomic core facility. So, I am now left with 15K of funds for all other research activity, including consumables, which is roughly 1250 Eur per month. In a simplified term, I have less than 42 Eur per day of funds for daily lab research activities. I guess you don’t need a big imagination on how to spend 42 euros per day on medical research. It is very important to remember this number (42 eur per day of research fund) that we have for a breakthrough research.

@MEFoggyDog Thanks so much sally 💙💙

Row. Love to @s_chambers92 and all who care for Row. Shauna and Team Row have done amazing fundraising work this year too. Remarkable effort 🫶 #PwME #SevereME #CarersRightsDay instagram.com/reel/DCm8re_ID…

@jambom12 @ton1872 @miarobbo3 @Lilimaijones21 Seems a strange post to come out on. Good for you though. I hope you live a long and happy gay life 🌈

@ton1872 @s_chambers92 @miarobbo3 @Lilimaijones21 Still gay 🤷‍♂️

1 year since the most horrific foul the game has ever seen by @Lilimaijones21 🤣🤣🤣

@RobbieBlunt5 @miarobbo3 @Lilimaijones21 Was hoping no one would spot that 🤦🏻‍♀️

@miarobbo3 @Lilimaijones21 Her tampon malfunctioned 🤷🏻‍♂️

@GameOnComeAlive @miarobbo3 @Lilimaijones21 Fortunately it isn’t real. Clip is AI generated. No real person would have such weak feet.

@miarobbo3 @Lilimaijones21 Is that real?