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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, UKleedsmenetwork.yolasite.comJoined October 2012

Leeds ME Network’s Tweets

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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A potent thread about the history of #MECFS. The mistreatment of this illness by press, government & healthcare has had real consequences that need to be acknowledged. The thousands of #pwME who have suffered privately for decades deserve no less. 💙💜
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🧵Thread begins (20 tweets): @sajidjavid @DHSCgovuk @NHSuk Today is the final day of #ME awareness month. Recent developments are most welcome. However, it is important that we are reminded of the long and torturous history of this illness & its impact on generations of patients:
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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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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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"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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