Mum. Carer for my son. Former English teacher. Researching bacterial and viral infection &symptoms #Lyme #ME #LongCovid #Pandas #Pans #Bartonella #Convalescence
Gloucestershire
Joined December 2013
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- Following4.8K
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Susannah H retweeted
#DearAndy
We've written to @andyburnham
about Olympic sprinter @BethDobbin recent outreach to him.
Features: Dickens, Monbiot, disease prestige & twiglets!
šļø š Link below
ALT Graphic with the headline āDobbin & Goodburn: A Tale of Two Citiesā and subtitle āA letter to Andy Burnhamā in bright pink on a navy background, featuring a photograph of Andy Burnham in a circular gradient frame.
Susannah H retweeted
1/5 Happy 7th š#PoTSAwarenessDayš
Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating health condition.
#PoTS is an abnormality of the autonomic nervous system, which controls all bodily functions that we donāt have to think about.
Individuals experience orthostatic intolerance, which means that they mostly experience symptoms when in an upright position.
The majority of people with PoTS also have other related medical conditions such as hypermobile Ehlers-Danlos Syndrome, allergies, Long Covid and ME/CFS- all of which can make symptoms worse.
If you are new here please take the time to view the image thread below to learn some basics about PoTS:
š£ Symptoms
š£ Tests/Investigations/Diagnosis
š£ Treatment- lifestyle changes & medication
View our website to learn more about symptoms: potsuk.org/about-pots/symptoā¦
#MedTwitter #TeamGP #ChronicIllness #LongCovid #InvisibleIllness #MECFS #EDS #MCAS @DrSdeG @elisaperego78 @DrSarahJarvis @mermhart @cpgale3 @LongCovidAdvoc @LC_Physio @MEAssociation
Susannah H retweeted
The clocks go back tonight ā a timely reminder to think about vitamin D.
From October to March our bodies canāt make enough vitamin D from sunlight. To keep bones and muscles healthy itās best to take a daily 10 microgram supplement of vitamin D.
Info ā”ļø nhs.uk/conditions/vitamins-aā¦
ALT NHS advice to take 10 micrograms of vitamin D daily during autumn and winter with a vitamin D supplement bottle against an autumnal background.
ALT NHS graphic showing vitamin D supports healthy bones, teeth, and muscles with icons of a knee joint, tooth, and flexed arm muscle.
ALT NHS advice highlighting the need for vitamin D supplements in autumn and winter due to insufficient sunlight and dietary sources.
Susannah H retweeted
SIGN asks clinicians to use the word delirium instead of acute confusional state, acute confusion or acute encephalopathy.
Its reasons are clearer communication between professionals, more accurate information for patients and carers, and more consistent use of detection tools and treatment.
ALT Expanding brain meme in three panels. Panels read: 'Confused', 'Acute confusion, cause unknown', and 'Delirium, hypoactive, day 2, likely from codeine and constipation. Both being treated.'
Susannah H retweeted
We're happy to share that we now have an MP briefing live (joint with Action for ME) which you can send to your MP to give them all the info they need to support @BethDobbin in her campaign for increased ME research funding.
You can find the briefing and our template š
Susannah H retweeted
Doncaster Free Press: 'Doncaster woman raises Ā£15,000 for research into illness affecting Olympian sister Beth Dobbin'
'The sister of former Olympian sprinter Beth Dobbin says she is incredibly proud to have raised over Ā£15,000 for ME Research UK.'
doncasterfreepress.co.uk/spoā¦
Susannah H retweeted
Well explained segment from @VirusesImmunity on the role of dormant viruses and the immune system in #longcovid and #mecfs
NPR: 'The dormant viruses in all of us may help explain long COVID'
14-minute listen ft. Akiko Iwasaki.
Host Nathan Rott shares that he has family members impacted by Long COVID
npr.org/2026/10/23/nx-s1-598ā¦
Susannah H retweeted
A warm welcome to Yvette Jackson, who is joining our Steering Committee, bringing her invaluable experience as carer to her husband, Andrew, who lives with ME/CFS.
š„ Watch Yvette share their story of life on the farm in this moving ITV interview: itv.com/watch/news/juggling-ā¦
Susannah H retweeted
Olympic, Commonwealth and European sprinter Beth Dobbin has called upon Prime Minister Andy Burnham and the Government to fund ME/CFS research properly.
You can read the full story on our website:
meresearch.org.uk/beth-dobbiā¦
Susannah H retweeted
š Thank you Beth for responding so clearly. We completely agree. It's an inaccurate & pitiful response.
SequenceME needs FULL funding @andyburnham @YvetteCooperMP not just the pittance its partially received. We cannot make progress with this approach.
BBC Sport approached @number10gov for a response to my letter to @andyburnham . The @DHSCgovuk responded and unfortunately this statement isnāt anything we didnāt already know. There are also fundamental inaccuracies within it.
Please also bear with me; Iāve had an extremely large amount of messages and Iām operating with a very limited capacity. @Ed_Miliband @tessamunt @JoPlattLeigh @KatieFalkingham @BBCSport @BBCNews @UKLabour @ThereForME_UK @YvetteCooperMP
Susannah H retweeted
Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research.
We are working with her to amplify her message, and you can help (if capacity allows).
Write to your MP to back her call - and to make things easier, we have a template for you.š
ALT Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - Ā£6.6m, Parkinsons, Ā£79.1m and Dementia Ā£496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"
Susannah H retweeted
BBC: Olympian Dobbin writes to Prime Minister over ME funding
Former British sprinter Beth Dobbin has called on Prime Minister Andy Burnham to fund more research into the "life-decimating" condition that has resulted in her spending 22 hours a day in bed
bbc.com/sport/athletics/artiā¦
Susannah H retweeted
Weāve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ā¤ļø millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know thereās so much more we could say, but with limited capacity, weāve tried to focus on the lack of funding, resources in the NHS and how much itās actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, weāve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
Iāve had thousands of messages on multiple platforms since sharing my story so please bear with me ā¤ļø
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Susannah H retweeted
Sjogrens is a wildly heterogeneous systemic auto immune disease. I know a woman who presented at age 18 with hypokalemic paralysis from. They told her it was psychosomatic, related to stress, from until the labs came back.
HIGH-YIELD PEARL 3
A 28-year-old woman suddenly develops quadriparesis. Her serum potassium is 1.9 mEq/L. Creatinine is normal.
Could this be the FIRST manifestation of an autoimmune disease?
YES. Think SJĆGRENāS DISEASE.
A clinical trap every rheumatologist and physician must recognise.
5 CLUES YOU MUST NOT MISS
1. Severe hypokalaemia can cause paralysis
Acute flaccid weakness, occasionally progressing to respiratory muscle involvement.
ECG abnormalities and life-threatening arrhythmias may occur.
Donāt automatically label it familial hypokalaemic periodic paralysis.
2. The acidābase status provides the biggest clue
Hypokalaemia + normal anion gap metabolic acidosis = THINK RENAL TUBULAR ACIDOSIS (RTA).
3. Check the urine pH
In classical distal (Type 1) RTA:
The kidney fails to acidify urine appropriately.
Urine pH typically remains >5.5 despite systemic metabolic acidosis.
Renal potassium wasting may be present.
4. Normal creatinine DOES NOT exclude renal involvement
Sjƶgrenās disease commonly produces tubulointerstitial pathology rather than glomerular disease.
Look for:
Distal RTA
Nephrolithiasis or nephrocalcinosis
Hypocitraturia
Tubular concentrating defects
5. Sicca symptoms may be absent or unrecognised
Renal manifestations can precede the diagnosis of Sjƶgrenās disease.
Consider anti-SSA/Ro testing and an appropriate Sjƶgren evaluation when the clinical context supports it.
QUESTION
What is the mechanism of distal RTA in Sjƶgrenās disease?
ANSWER:
Immune-mediated tubulointerstitial injury impairs distal urinary acidification, involving dysfunction of the collecting ductās acid-secreting machinery, including Hāŗ-ATPase.
This produces impaired hydrogen ion secretion, metabolic acidosis and often renal potassium wasting.
THE LIFE-SAVING TREATMENT PEARL
In severe symptomatic hypokalaemia:
Urgent potassium replacement with cardiac monitoring.
Correct associated magnesium deficiency, if present.
Introduce alkali therapy after appropriate potassium correction, with close electrolyte monitoring.
Potassium citrate is useful for longer-term management in suitable patients.
REMEMBER:
A normal creatinine does not mean normal renal tubular function.
And sudden paralysis may be the first clue to Sjƶgrenās disease.
#Rheumatology #SjogrensDisease @IhabFathiSulima
Susannah H retweeted
It's rare that an article about #MyalgicEncephalomyelitis trends on Twitter, so thanks to @KatieFalkingham for writing it and @BethDobbin for agreeing to be interviewed. Let's hope this leads to better understanding among doctors and the friends and families of patients. #r4today
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
Susannah H retweeted
You shouldn't have to be an Olympian to be believed by doctors or the State... Many ordinary people have had their lives upended for decades without help or support. Even worse their disease has not been taken seriously by far too many scientists and medical doctors.
LBC: 'What is ME? Former Olympic sprinter Beth Dobbin, 32, now in bed for 22 hours a day due to condition'
'Former British 200m runner, who competed at Tokyo 2020 Olympics, says she now has chronic fatigue syndrome and myalgic encephalomyelitis'
lbc.co.uk/article/beth-dobbbā¦
Susannah H retweeted
"Beth Dobbin, who ran for Great Britain at the Tokyo Olympic Games in 2021, now spends more than 22 hours a day in bed"
athleticsweekly.com/news/betā¦
Susannah H retweeted
bbc.co.uk/sport/athletics/arā¦ I feel so sorry for Beth Dobbin, and of course the millions of others like her. Reading her story, made me remember that deterioration in my running was the first thing I noticed in 1989, the first thing that āwentā. I hope she can get her life back.
Susannah H retweeted
This can happen to anyone. And when you have it, to people who donāt understand, you can seem paranoid about resting and not pushing through fatigue.
But you arenāt, because the risk is real.
And thank you to Beth for articulating it so well. Iām so sorry it has happened to you.
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx
Susannah H retweeted
"There is nothing out there. There is nowhere to go. You go to the GP and there's nowhere for them to send you to. It's really at the back of the queue as far as research, knowledge, expertise, funding."
Thank you for talking so honestly about #ME Beth. Iām so sorry š«
The Olympic sprinter now bedbound for 22 hours a day bbc.in/3TWaqpx