⚫️💙Jane Skeates

@MECFSNanoneedle @Naomi_D_Harvey @sunsopeningband Crumpets are quite different to English muffins. Much heavier, chewier and with distinct holes and usually eaten toasted. Best with lots of butter.

@Naomi_D_Harvey @sunsopeningband Ha interesting. I have been to the UK, but I not in a way to go to the grocery stores. Thanks. <3 I thought crumpets look similar to English Muffins.

If anyone needs to know this: You can cook American style pancakes (with thick batter) on baking sheets in the oven in a single batch! You can then freeze them, & have one at a time by popping it in the toaster when you want one ☺️ Takes less effort to make this way

@Annakwood Ooops! Didn’t realise you wanted to use the dates. Could you put them through the cake like in sticky toffee pudding? I think they need to be cooked first or soaked with bicarb?

@EJS1958 Looks great, but doesn't use up the dates 😕

Arghh Tesco substituted own brand dates which are disgusting (small print says partially dehydrated!) for the proper dates we ordered. Suggestions for gluten free bakes please? Ideally involving chocolate!

@Annakwood bigoven.com/recipe/squidgy…

@EJS1958 I am, that sounds amazing thanks!

@BillDunblane @CadburyUK I wonder if that’s what they did to the chocolate on Creme Eggs. Like eating a wax crayon.

Never buying Cadbury's @CadburyUK chocolate again. Opened a box of milk tray and my first experience of the new manufacturing with palm oil. Loved it all my life, but not now. Horrible taste and texture. oleaginous. 🤢

@Talmandaniel @cfs_jo Blyth? We’re practically neighbours!

My car had to go back last week because my tremors are back with a vengeance. It's painful but I've recently acquired Moby from the wonderful @cfs_jo and after spraying the seat chrome silver I'm trying to decide on a design for the back. Preferences?

@mx__worldwide @Naomi_D_Harvey I’ve heard of people using ice cubes on them. Think it needs to be in the early stages.

Have got a cold sore. First one I've had since becoming severe but definitely not first ever. Reluctant to use an antiviral cream as very sensitive to many topicals now (and to aciclovir oral). Is it fine to just let it heal on its own as someone with severe/very severe ME?

@lamestain__ @rhymeswithvery @Dan_Wyke That’s it!

@EJS1958 @rhymeswithvery @Dan_Wyke Ezetimibe?

Statin update: I've been almost entirely free from nerve pain since stopping statins a week ago. Unexpectedly my Visible HRV reading has also improved - climbing into the 60s for the first time ever. #MyalgicEncephalomyelitis #MECFS

@cfs_jo @Annakwood I don’t know if you get PIP, but they routinely reassess people approaching SPA to try to get them off it. Attendance Allowance has no mobility component so they can save £££.

@Annakwood Luckily I can prove my circumstances, it’s just the hassle and extra work it generates. 3 reviews in 2 years is overkill in my opinion. Especially at 65…I mean good luck getting me into work 😆

So…this UC review feels different to my previous ones. They think I’m in employment earning £1k a month 🤷‍♀️ Also asking questions about me living alone. I’m trying not to feel persecuted.

@rhymeswithvery @Dan_Wyke …and b all interest when I enquired directly.

@rhymeswithvery @Dan_Wyke One dose of atorvastatin and within hours I couldn’t walk upstairs. Suspected rhabdomyolysis from urinary symptoms but GP didn’t test. Give the alternative med (forgot name, maybe began with E) and similar result. MEA advise strongly against statins but no advice re other med….

@KSchnickelfritz I don’t write birthday cards etc any more, but get OH to do them. I can’t write simple words; letters merge into each other. In particular I can’t write my sister’s name because I can’t write “double nn”.

Hand wrote some thank you letters this morning. My handwriting is terrible now. I write faster than I can think so it’s riddled with errors. Don’t know if it’s the ME or the fact I hardly write anymore.

@Dan_Wyke Just by the way, I was advised by a doctor that my Vit D was far too high. I wasn’t there for ME stuff but had been feeling generally worse for months. I had increased my dose during the early days of the pandemic as it was supposedly protective against the Coronavirus.

I discovered some interesting stuff. For example: 1/ Red Panax Ginseng is better for energy impairment than the regular white stuff; 2/ I should probably stop taking Iron + high-strength Vit D; and 3/ CBD interferes with the metabolism of Amitriptyline, reducing pain-relief. 2/2

Many of you will have already done this, but if you haven't, I recommend asking the AI of your choice about each of your supplements and medications in relation to #MECFS and/or #LongCOVID, then asking it to produce a report by analysing the information together. 1/2

@ThePOTSPostman @KatyBruce108 Woke up one morning and felt like I was walking on rubber, like the surface in a playground. Dizzy on standing & had to keep sitting down at work. End of ICU shift, sat watching my fingers twitch uncontrollably. Twitching is a warning sign ever since

For those diagnosed with ME/CFS, what were your early signs, and how did you come to recognize PEM? Trying to make sense of some things I’ve been experiencing.

@MEAssociation My only interaction with a Practice Nurse re ME was when she was doing annual review for asthma etc. I asked if she was going to record anything about the condition that was threatening my ability to work and ruining my life. Met with a blank look, funnily enough.

Practice Nursing: Supporting people with myalgic encephalomyelitis in primary care "Practice nurses are often the first healthcare professional a person with ME will speak to, and may be the one they turn to when their symptoms do not fit neatly into a diagnostic category, or when they feel they are not being believed by other clinicians..." Read more: magonlinelibrary.com/doi/full/10.12… @actionforme  #pwME #MyalgicE #MECFS #MyalgicEncephalomyelitis #NursePractitioner

@Dan_Wyke Come to think of it, I haven’t heard anything about her recently. Dare we hope she’s thrown in the towel?

@EJS1958 Ah, yes, per David Tuller, "Bristol University's methodologically and ethically challenged pediatrician and long-time grant magnet... a gusher of misinformation, publishing seriously flawed and sometimes fraudulent research at a prolific rate." 😳 virology.ws/2024/06/12/tri…

I don't know but could M.D.'s decision to repeatedly pass up on opportunities to mention #MECFS in his @PrivateEyeNews column 'Medicine Balls' have anything to do with his relationship with Dame Clare Gerada, who's married to Professor Sir Simon Wessely - a psychiatrist... 1/2

@Dan_Wyke And he worked with Esther Crawley.

... who has been honoured by successive governments for claiming that ME/CFS (and Gulf War Illness) don't exist except as mental disorders? 2/2 The image is a screenshot from Dr Phil Hammond's website for events which took place at Edinburgh Fringe in 2024.

@keithgeraghty @TomKindlon @FBMH_UoM @FBMH_SR @aneezesmail Congratulations Keith. Wish there were more like you!

Happy New Year all, I start this year with a bit of glassware from @FBMH_UoM @FBMH_SR with award from University of Manchester for our work @aneezesmail and Public Patient Engagement in ME/CFS and LongCovid. blogs.manchester.ac.uk/bmh-sr/2026/01… Its a great honour to do this work, and I will continue in 2026

@johnthejack And the same to you, John.

Happy New Year to all. And of not happy, at least as good as it can be...

@subversivepsych ME post tetanus vaccine decades ago. I’ve always (so far 🤞) been ok with flu vaccine so always have that due to chest problems. Others, it’s down to whether I am more worried about the disease or the possibility of making ME worse. So far 3/12 decline with AZ, slightly less w Pf