YouTuber and behavioural scientist Pete Judo presents the infamous #PACEtrial which he describes as "what is possibly the worst medical trial in modern history. (contd)”
I wouldn’t have the energy for the whole event so plan to come in just before the chat over free tea/coffee/water & biscuits. Do say hello if you see me. 👋
'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'
After going out all day yesterday, I really shouldn’t be surprised that I’m so exhausted and unable to do anything today. This is #seid. Plus, I stayed up late last night since my wife was working (from home) until midnight, which always happens the night before she takes a vacation day.
It took me all morning & afternoon just to put through an order for thread! I’m too tired to serge fabrics for pre-washing, so I’m tempted to pay for the sports channel for a day so I can watch #BlueJays…
I bought thread and #sewing stuff online from Wawak on Thursday while I was stuck at home recovering from going out the previous day. #SEID
Yesterday was a holiday so everything was closed, but I wouldn’t have been able to go anywhere yet, anyways.
Now today on Saturday, my order from Wawak arrives in the morning just as we’re having breakfast! If I wanted to buy this stuff locally, I wouldn’t have even had a chance to leave for the bus stop yet. That was much quicker than I expected! @sewing
We were supposed to have fish & chips for #dinner last night because I wanted something quick that wouldn’t require too much of my energy to make, since I knew I’d be sewing all afternoon. #seid
When my wife got home from work, she offered to make dinner. Nice!
But then 2½ hours later, I went into the kitchen and saw the oven wasn’t preheated, the box of fish was unopened and she just finished cutting up potatoes into fries.
Went to see my doc with my wife this morning, just got back home.
He said I need to go to the ER and apparently I’m exceeding the max daily recommended dose for Vimovo/Naproxen. Now I know. Also taking Tylenol #3 (with codeine) for pain is “fine” for now…
In Canada, ER waiting times are typically over 12 hours, so we decided to come home so I can get some much needed rest first (#SEID#MECFS is atrociously bad right now) and then we’ll head to the ER sometime tomorrow.
2-minute video of Dave reading his poem plus a separate text piece by him
Dave who became ill with #CFS at 21 17 years ago, describes what it’s like to live with the condition, the impact on his life & sense of self worth, & how he has built a meaningful life, despite the condition.
“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”
“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”
(UK)
Living with M.E. A Photographic Study by Jeremy Jeffs
Would you be willing to participate and share your ME journey?
Photographer Jeremy Jeffs is looking for more people to take part in a project that aims to give identity and visibility to people who are living with M.E.
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For the past 2 years Jeremy, who has M.E. himself, has been travelling around the country photographing people in their homes, with the aim of showing the many ways in which the disease affects people.
It shows they have less than 16,000 DNA samples (they have funding for 25,000). Hopefully the ME community will make a big effort to reach more people in next 8 weeks.
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"Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID"
by Prof Brian Hughes ( @b_m_hughes ), Prof Steven Lubet & David Tuller DrPH
"(Contd.) Moreover, when tracking treatment outcomes with objective measures—such as physical endurance tests, actometer data, records of workplace participation, or analyses of dependence on social benefits—the research generally showed minimal or null effects for both GET and CBT.”
“(Contd) Ongoing resistance to the paradigm shift only ensures that patients will continue to be offered inadequate & possibly dangerous therapies. Recent reports from patient support groups suggest that many health care services across England are not yet aligned with the new ME/CFS guideline, still offering treatments that are now disfavored”
“What's more, by the time a person develops ME/CFS and receives a formal diagnosis (if they do), they or their treating doctor might not make the connection between their illness and a previous viral infection.”
“Other viruses, such as Epstein-Barr virus (#EBV), are also thought to trigger ME/CFS, although the mechanisms are equally complex.
Like other human herpes viruses, EBV can hide out in the body, evading the immune system for years until stress or some other illness reactivates the virus.”
"They didn’t understand PEM. I was told if I didn’t try GET it meant I didn’t really want to get better. I was told it was impossible for exercise to harm. They told me how GET helped patients much sicker than me with MS, stroke & Parkinsons. If they could do it, why couldn’t you."