Elisabeth Klaar | Oak Tree Studio

I'll be shifting from X/twitter to LinkedIn and can be found there by searching for my name.

Reminder that a lot of people with chronic illness/disability aren’t looking for unsolicited advice. I hate conflict so had ignored three similar messages from this person. But this time I thought I should try & explain. I know it comes from a good place but please don’t 💙

Heightened innate immunity may trigger chronic inflammation, fatigue and post-exertional malaise in ME/CFS medrxiv.org/content/10.110… Co-authored by some of the biggest names in the ME/CFS world in the US #MEcfs #CFS 1/

Well said Katy.. I thought the same myself!

That was the incident which I was thinking of when I mentioned this..

Plus Chris Pointing as the bbc had him good and proper!!

Could I suggest that in the lead up to @DecodeMEstudy announcing results & the predictable carefully coordinated backlash from the BPS cabal, those who will be representing #pwME study this guide in order to be well prepared.

We are doing a mail out too for advocates & pros who do media!

📢 Our Campaign Guide is out! It deals with common media traps that we need to know how to deal with 🗣️ Part One covers the ‘Bait & Switch' tactic: ‘Its not ALL in you Head But…’ Easy-to-read download incl 💌 Help shift the paradigm and share away! longcovidadvoc.com/post/not-all-i…

Could I suggest that in the lead up to @DecodeMEstudy announcing results & the predictable carefully coordinated backlash from the BPS cabal via the SMC, those who will be representing #pwME as they engage with the media study this guide in order to be well prepared.

That’s @MEAssociation @actionforme especially. You’ve got a whole month to have statements and have them ready to go when they say it’s just a small part of the BPS puzzle etc and we shouldn’t just narrow our focus to one aspect as the real driver is likely psychological. #ME

The Department for Work and Pensions has finally released excerpts of secret reports that show its errors contributed to deaths of universal credit claimants, days after MPs voted for £2 billion-a-year-cuts to the UC health element. #DWP #UniversalCredit disabilitynewsservice.com/dwp-publishes-…

I truly can’t say if it would work though. Making your garden inhospitable to them would help stop them claiming it as territory but that’s easier said than done.

A local cat seems to have decided to mark its (my!) territory by weeing on my garden sofa. Any suggestions for how to stop this? Plants or scents that may put it off? (@Naomi_D_Harvey ?)

The rest of the year I do phone appointments. GPs definitely should be considering PEM and recovery times when deciding who should get home visits.

Another thought: I'm still having to drag myself in in person for this once a year MOT, despite being housebound and it taking me 2 weeks to recover. Ideally the GP and nurse would come to me. But the bar for home visits is so high you have to be on the verge of death.

... to refer for symptom management and investigation. I shouldn't have to do my own research & present it to a GP and be thankful that I finally have a GP who goes "yeah sure" when I ask for referrals unlike all the others who dismissed me as anxious, just to get medical input

She also asks if I want referrals to physiotherapy, for mental health support, or to the social prescriber, and respects my answers when I say I don't think they have anything new to offer me.

... & ESR. She also ordered a throat swab and urine culture and got the nurse to check my blood pressure, heart rate, oxygen sats, and weight. I have to specifically ask for this each year, and the bloods aren't as thorough every year, but it can be done!

I ask my GP to run bloods each year. Last year she did: full blood count, pituitary TFT (thyroid), bone profile, creatinine and electrolytes, CRP (inflammation), full lipid profile (cholesterol), liver function test, total CK, ferritin, total vitamin D, folate, HBA1C (diabetes)..

Why over so many years of listening do we not have PEM in the ME delivery PLAN @wesstreeting you need to take responsibility over this, No Dr in the UK will ever try to understand if you do not make them youtube.com/watch?v=m1HV7T…