My head is spinning. What do I do for my son? In what order? Help apheresis? V9? Supplements? Biopsy for mast cells?Triple therapy? Nothing- &hope he just gets better. This is so hard for a non-medical person- who can I ask for help deciding?#TeamClots #LongCOVID #LongCovidKids
Leeds ME Network
@leedsMEnetwork
Patient self-help group sharing local and national ME/CFS information. See more our website and frequently updated Facebook page.
Leeds ME Network’s Tweets
1/2 article: Mum’s plea to save daughter’s life after teen ‘left in A&E for eight hours’
Trigger Warning - **discusses severe ME which may be distressing**
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2/2 "The teen ended up in intensive care as doctors battled to save her as her sepsis worsened – a near tragedy that Jo (mum) thinks could have been avoided."
meassociation.org.uk/pspv
#pwME #MECFS #MyalgicE #SevereME #YoungpwME
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2/2 "The teen ended up in intensive care as doctors battled to save her as her sepsis worsened – a near tragedy that Jo (mum) thinks could have been avoided."
meassociation.org.uk/pspv
#pwME #MECFS #MyalgicE #SevereME #YoungpwME
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This is a screenshot of the fb post shares 💔
Please help Jo save her 17 yr old daughter, Ella 🙏🏻💙
#MEcfs
#MyalgicEncephalopathy
#MyalgicEncephalomyelitis
#sepsis
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#MECFS #POTS facebook.com/17141146958318
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PLEASE PLEASE PLEASE share this torture the LGI hospital in Leeds is putting my daughter through
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Like a lot of #pwME I feel it is absolutely essential to include Drs Weir and Speight with all their years of experience in these important meetings. Please support this petition. twitter.com/swastrosarah/s
This Tweet is unavailable.
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This is the message that journalists need to get out widely about long Covid: don’t overdo it. Pacing, pacing, pacing.
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Lionel Messi “pushed himself to return too quickly from #LongCovid which worsened the effects.”
"I came back before I should have & it got worse because I went too fast & it ended up setting me back. I wanted to run, to train - in the end, it got worse.” cnn.com/2022/05/30/foo
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The silence from the BPS crowd following the APPG on rethinking ME is interesting. Very unlike them to keep quiet, I wonder what their next move will be.
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In Clare’s thread you can substitute the word #LongCovid with #ME and this is, very much, the situation ME sufferers have experienced for decades. Tragic that LongCovid sufferers are now having to deal with identical issues.
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I wasn’t informed that I was at high risk of #LongCovid or prioritised in the vaccine roll-out. I wasn’t told that due to my LC, “severe and prolonged” vaccine side effects were likely. I wasn’t given antivirals on reinfection. My LC remains untreated. 1/
@sajidjavid
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What sort of health system denies the reality of a medical condition that's visibly killing a patient, and furthermore, denies them palliative care? I'm not sure if I can ever forgive the psychiatrists who deceived the medical establishment into thinking ME isn't real. #MECFS
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My Aunt died in an old peole’s home. In the year before she died she had a massive ME relapse. By that point she couldn’t communicate. They kept trying to get her up and move her around, We constantly pleaded for the nursing staff to let her rest.
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Looking forward to #MyalgicEncephalomyelitis APPG report, Rethinking ME, launch today in Westminster. Now just got to work out what I’m going to say! Two hard acts to follow. Watch tweets for pics and updates from 3pm
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Omicron wave of mass infection showing its impact. Too many friends & colleagues reaching out for advice on #LongCovid. Heartbreaking.
A 🧵on Rest & Pace. Biggest advice: don't repeat the mistake that most of us from the first wave in 2020 did i.e. push yourself.
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I'm just going to come right out and say it. SARS-CoV-2 has damaged the worlds immune system to such an extent now that we are beginning to see viruses we have controlled for decades become a problem. There is no "mystery" here unless your head is in the sand.
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Some #LongCovid patients report that hyperbaric oxygen therapy cured them or at least made much better. A Phase 2 RCT is now underway to establish its effectiveness.
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That is the default conclusion that they are taught in med schools, usually by old male professors.
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I’m afraid that it is the thought process that’s ingrained to students at med schools during simulation trainings, where they try to replicate various IRL scenarios.
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Replying to
What is the thought process behind labelling it anxiety anyway?
Do they think that some people are emotionally REALLY overreacting to everything to such a degree that they induce the physiological reaction in their bodies that otherwise occurs only in life and death situations?
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One of my patients, a cardiologist with #POTS, said that they used to dismiss young women with tachycardia as anxiety until they themselves developed POTS and realized that it had nothing to do with anxiety and everything to do with disabling physical symptoms.
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If you have lived experience of a condition or a life event u may get labelled ‘biased’ or ‘subjective’ about it. I’d argue u can also be biased because of not experiencing it. So yes be transparent about your experiences but also about not knowing what it’s like to have them.
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Please read our latest review by et al. on “Unexplained post-acute infection syndromes”.
What a privilege to work with Jan Choutka, who is an #MECFS patient, expert and advocate. Grateful to on her expertise/insights 🙏🏼 (1/)
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First time in a while: Leeds ME Network is holding a meeting ‘in person’ this Tuesday 17 May starting at 12-30 pm. Venue is Meanwood Park open air Cafe. Look for the green signs on our table. All with #mecfs or #Longcovid plus friends, carers etc welcome
leedsmenetwork.yolasite.com
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Thank you so much for the support yesterday for our virtual #MillionsMissing event 💙
We've now launched a JustGiving page for donations to help fund our in-person event later this year.
You can visit our JustGiving page here - ow.ly/eqmz50J7otQ
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My eldest daughter Maeve died aged 27 on October 3. For half her life she had Myalgic Encephalomyelitis (ME). Bit by bit this awful illness stole the youth, promise, independence and eventually the life of an intelligent, creative, wonderful young woman.
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ME and my girl: myalgic encephalomyelitis took the life of my daughter Maeve. 's radical new approach is a huge step forward but the bitterest of bittersweet moments
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You can read more about the ME/CFS Priority Setting Partnership and its results here
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3. He announced the intention to develop a cross-Government delivery plan on ME/CFS for England, to be published later this year.
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2. He wants to co-chair a roundtable to bring together patients, researchers and funders with the aim to discuss the next steps and increase research according to the aforementioned priorities.
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The UK's Secretary of State for Health has made some important statements on #MECFS. I'll try to summarize
1. He welcomed the report by the ME/CFS Priority Setting Partnership that identifies the research priorities for patients.
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Leeds #MillionsMissing 2022 is kicking off right now over on the website - ow.ly/GOIs50J63pj
Join us to hear from local support groups: and Bradford Friends with ME/CFS
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🚨 A new review suggests that pathobiological processes involving central nervous system dysfunction due to impaired or pathologically reactive neuroglia (brain cells that serve the immune system) may explain #MECFS as well as many cases of #LongCovid. frontiersin.org/articles/10.33
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Disturbing to hear #bbcnews reporting that the SARS-CoV-2 virus is cleared from the body in #LongCovid when in fact the persistence of viral "reservoirs" in organ tissue is one of the leading hypotheses for the cause of #LongCovid (and #MECFS). #r4today
gut.bmj.com/content/71/1/2
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Shared with permission.
Written by the father of a 10yr old previously healthy child. #COVID19 December 2021.
This child has to crawl to the bathroom as can’t stand. Tests normal. Referred to physio and psychology. No treatment plan. Desperate for help.
#LongCovidKids
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Researchers studying the effect of Leronlimab on #LongCovid may have found a surprising clue, one that contradicts their initial hypothesis. An abnormally suppressed immune system may be to blame, not a persistently hyperactive one as they had suspected.
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A recording of our Science webinar is now available on our YouTube channel. 👀
You can also find an audio recording and the transcript at our website on the Blog page.
youtube.com/watch?v=qNX15_
#decodemestudy #decodeme #biomedicalresearch #meresearch #pwME
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"An $8 million clinical trial of a mitochondrial enhancer, no less, in #MECFS? I thought I was hearing things but it was so, and, in the end, it even makes sense given how rapidly some parts of this field are moving forward. But first, a little backstory."
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