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Sally
@BookDreamerSal
Mum to two, chronically ill with ME 30 yrs, and run support group for parents with ME. Crafter. One day hope to return to writing.
UKJoined March 2015

Sally’s Tweets

I have never thought it was right for asthma. But was refused tests other than x-ray in summer 2020. Asked if maybe I was focusing on symptoms too much. Bronchiectasis and many other lung issues can't be detected by X-ray. So I fully expect to be told I'm fine and nothing wrong.
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Chest x-ray again today, chronic cough not gone from covid 2020. Breathing test was good but didn't indicate asthma, which is what GP has diagnosed for a good year or so. I pointed out if it's not asthma shouldn't we check it's not something else... She mentioned bronchiectasis.
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I’m curious what you guys think. Will there be a treatment that cures #MECFS in this decade?
  • Yes, complete cure
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  • Improvement but no cure
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  • No improvement nor cure
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Why aren't we taught more about our feminist history in schools? My teen kids haven't even been taught about suffragettes.
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People full of contempt for safeguarding-fixated mums could do with reading up on how hard Victorian feminists fought, despite not being able to vote - and against determined and vicious opposition from the men in charge - to get the age of consent raised from 12 to 16
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Pls share to stop confusion. THERE IS NO £2,500 CAP ON ENERGY BILLS. Instead the new 1 Oct guarantee, like the old caps, limits - Daily charge (28p gas, 46p elec) - & Unit rates (10p/kWh gas, 34p/kWh elec) So use more, pay more. £2,500 is just what someone with avg use'd pay
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I have horrible flu like virus. Daughter has it first, temp 39 on 3rd day then started feeling better. I had temp of 39c earlier so hope that means I will start feeling better now. Not covid, we've both done negative tests. But vv nasty virus all the same. I hate viruses.
Unisex changing rooms are not fully inclusive when women are walked in on, twice, and having to self exclude or talk about shopping in pairs. 'happened before' so why isn't more done to keep girls safe? Walking girls back to car after event isn't enough.
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Young women walked in on by men while trying on clothes in Primark Cambridge Unisex changing room...she starts by saying how she's supportive of this, then breaks down crying. #KeepWomenSafeAndSeparate
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Wow, clinical guidelines for Long Covid that set out statements that I've waited 30 years to see applied to ME. I'm not sure whether to celebrate the better understanding or feel despair at the decades of mistreatment. I'm glad more appropriate care will be given henceforth.
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Really proud to have been a member of the @WHO Guideline Development Group for #LongCOVID Post-COVID Condition #Rehabilitation released today app.magicapp.org/#/guideline/64
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Exciting to be part of this and see a large study being done.
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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
Decode1ME logo In light of Her Majesty Queen Elizabeth II’s death and this period of national mourning, we seriously considered how best to proceed with the planned launch of our study today.  We recognise how much the DecodeME study means to people with ME and the patience of the community in waiting for its full launch.   Therefore, we are continuing as planned by opening full recruitment today. You can now visit our website and click 'Take part' to begin. 16 or over? Live in the UK? Have ME/CFS? Visit decodeme.org.uk
DecodeME logo. Take part now. 16 or over? Live in the UK? Have ME/CFS? Visit decodeme.org.uk
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Most people who have an autoimmune disease are women. So there's so much key information in the fact that most people who suffer from post viral illness are also women. Yet society chose to ignore the obvious and blames it on things like anxiety. Sexism is stronger than facts 1/4
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Blood test for Long Covid! Maybe we will eventually see one for ME.
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The first diagnostic blood test for long COVID screening has been approved by European regulators, raising hopes for the millions of sufferers of this debilitating condition which can arise after a COVID-19 infection. bit.ly/3RrOWu2
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I'd love to do this with my son, he still likes hugs at nearly 20 but picking him up would be far beyond my poor broken body! Missing him, returned to uni early.
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Today, when I was walking with my 18 yr old son we talked about the concept that, ‘one day I carried him for the last time’. That idea you put a young child down & never pick them up again. We decided that was unacceptable so I gave him a piggy back for 20 yds.
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I suppose some disabled people who rely on benefits will just have to cut back on being alive given the next year's forecast of £6k bills is around 50% of disability and out of work benefits. What percentage of your income will you be spending on fuel bills?
A meme with a lavender background that says things jumpers can't do: generate heat generate powerful electrical hospital beds mobility scooters wheelchairs oxygen pumps stairlifts rechargeable hearing aids personal and system smart devices etc.
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I'm watching kdrama #tomorrow. There must be female writers in this, so many episodes have very feminist messages. It's been more disturbing than I expected, despite being about grim reapers stopping suicidal people. Latest ep on forced prostitution during Japanese occupation.
Yes, this! Crashing with having to care for my hubby who has been in bed 3 weeks with hamstring injury. The fear that this lower level could be permanent or take months or years to improve from is real.
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Every "crash" or flare up of symptoms is accompanied by the fear that it might be the start of a permanent deterioration. The uncertainty is terrifying. Some of this could be ameliorated by proper medical support. #MECFS #LongCovid #MedTwitter
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Turn on BBC to see a garden of fake grass and everyone ethusing about how wonderful it is. Why encourage this environmental travesty? No it's not a 'brilliant outside space'. Worst house on the street, BBC
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In tears from BBC news report on the 'care' of disabled children and adults in Ukraine. So much appalling neglect.
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Today I was tutted at when parking in a disabled space. I had all these tubes hidden under my clothes, so I looked like a young, healthy person. But in reality, I still have a disability, despite choosing to hide my tubes. Friendly reminder that most disabilities are invisible!
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Meeting at Downing St this weekend to discuss how to address extreme heatwave while still committed to new fossil fuel extraction is like discussing how to put out a fire while pouring fuel on the flames - for pity’s sake, connect!
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Does anyone have #Facebook side navigation in browser? It was automatically changed a few months ago and I can't put it back again and I find it really hard to use still. Any hints on how to get it changed? I've tried reporting issues several times.