"Simply put, the bodies of people with ME/CFS can not efficiently do the work of recovery. And because these abnormalities are found in pwME but not matched deconditioned controls, we can confidently say that PEM is not deconditioning." likeannopeningbandforthesun.substack.com/p/in-pursuit...
My two key takeaways from this week on Twitter are:
1/ A lot of patients - especially women - have been gaslighted by doctors.
2/ A lot of doctors shouldn't be practicing medicine.
The only thing doctors are over-diagnosing is anxiety.
"Over-diagnosis" is a fiction designed to cast doubt on historically under-researched diseases which disproportionately affect women. Patients either meet diagnostic criteria or they don't.
The medical profession needs a radical overhaul. Since the pandemic started, there has been a sharp increase in chronic diseases which traditionally doctors have been taught to ignore/disbelieve. If drs cannot up their game, they should be stripped of their licence to practice.
The idea that ME/CFS is "over-diagnosed" is cooked up by biopsychosocial extremists to deny patients medical attention.
It's that time of the year again... Happy Easter, guys! 🐣🐇🍫
Saw my in-laws for two hours this week for the first time in 10 years. They are elderly and realistically this might be the last time I see them. There are people in this country who are responsible for preventing the development of treatments for ME, and breaking families apart.
Yes, I think there is.
My PEM is quite distinct and predictable so I'll wait to feel it coming on then take it.
I've recently discovered that an effective way to increase the inhibitory neurotransmitter GABA without resorting to Diazepam is to take, well, GABA. This stops my PEM in its tracks every time. Inexpensive and safer than benzos. Intending to experiment with a maintenance dose.
Another problem pwME face as a result of the difficulty their bodies have metabolising fat for energy is the accumulation of cholesterol. To make matters worse, pwME often can't tolerate statins because they can directly impair mitochondrial performance + cause neuralgia/myalgia.
One thing I hate about ME, that catches me out every time, is how long it takes for my body and mind to let go of even minor stressors. My fight-flight response gets activated at the drop of a hat and the associated thoughts rattle around my head for way longer than is helpful.
PEM incoming!
I sat in the garden for half an hour this morning and realised it was the first time I've been out of the house since a hospital appointment in October. People have no idea what life is like for us. #pwME #MECFS #LongCovid
I've been registered with the same surgery for 16 years and in all that time not a single dr there has indicated that they recognise me. Aside from being an inefficient way to practice medicine, I find it really rude! Is this a strategy GPs use elsewhere or unique to my surgery?
🪧 Bring Back Trains With Open Windows! ✊ 🚃
Timms Review of Personal Independence Payment: Call for Evidence
Published: 19 March
Closes: 28 May
If you claim PIP, and can manage it, please provide details of your experience by completing this online form.
#MECFS #pwME #LongCovid #Disability
www.gov.uk/government/c...
Have the wingnuts started organising meningitis parties yet?
It would have been a whole lot easier - and ultimately cheaper for the government - if they had installed air purifiers in schools and hospitals and other public buildings.
I wonder what could have happened to the immune systems of young people since 2020 that would affect how quickly meningitis has spread? Hint: you won't find the answer on the BBC website.
Six years on from the start of the pandemic, the political will to help #LongCovid patients is still lacking and clinical support is still hampered by a dogmatic element among HCPs who refuse to acknowledge the research about infection-associated chronic conditions like #MECFS.
Despite it all, the world keeps on giving us mornings like this.
Today the world feels less safe than at any time since the Cold War. As global security structures weaken, we all feel the economic and existential shockwaves. For people with ME/CFS, whose lives are already afflicted by physical and financial insecurity, this can feel overwhelming.
Fasciculations in my arms and legs and, curiously, my left eye are an early warning system that PEM is imminent. I would make a terrible poker player.
Being immunocompromised is exhausting. Everything I do requires at least five hand-washes! 😮💨
I want to say to that young man, take a different path: don't move into that damp basement flat; stop running; move somewhere warm and dry and live in the middle of nowhere. Life won't be perfect but you will have health and strength to face whatever may come. 2/2
Whenever I see old photos of myself I fancy that I see signs of sickness. I seem malnourished and have dark rings around my eyes. I wonder how many embryonic health issues I downplayed or ignored, how many times I left my GP's without any answers. 1/2
I spend my life trying to avoid PEM or recovering from PEM.
College has wrecked my daughter's health. The train she takes has sealed windows and no-one wears a mask. At college there aren't any air purifiers and no-one masks. She's missed about 30-35% of her course through sickness and is understandably worried she won't pass her A-levels.