KCIMESG

Kirklees and Calderdale Independent ME Support Group.

We are a local ME/CFS Support group covering Kirklees and Calderdale as well as surrounding areas.

[Anil van der Zee © @AnilvanderZee]

Since April, Salzburg has been home to Austria's first nationwide outpatient clinic for #pwME. From the get go there are many patients who are looking for treatments. It shows how people are desperate for treatments.

https://t.co/Noci5sAQJV

#LongCovid #millionsmissing #MECFS

[KCIMESG @KCIMESG]

#MEAwareness

[Emerge Australia @EmergeAus]

Henry was 12 when he contracted COVID-19. Within months, he developed #longCOVID & #MECFS. The things that had shaped his childhood, became out of reach. His story is deeply personal. But not rare. There are thousands of Henrys across Australia. Many of them are not yet heard.

[KCIMESG @KCIMESG]

#EndMalnutritionInME #SevereME

[EndMalnutritioninME @MalnutritionME]

Weight may need to be assessed by mid upper arm circumference, because people with #severeME may be unable to stand to be weighed, nor tolerate being hoisted.
#DietitiansWeek
#EndMalnutritionInME

[ME/CFS Science @mecfsskeptic]

4) Patients, family members, or friends who provide regular, ongoing support to ME patients can sign up.

You have to be 16 years or older and live in the UK.

More info here:
https://t.co/x4NeW0zyDJ

[WAMES @WAMESMECFS]

Dr Meadows talks to Prof Ron Davis abt why ME/CFS research matters. He emphasizes keeping studies simple, affordable, accurate & carefully executed by small but skilled team & notes how profoundly ME/CFS affects lives. He believes a cure possible. 18 mins
https://t.co/y18KmcFBrP

[KCIMESG @KCIMESG]

#EndMalnutritionInME #SevereME

[EndMalnutritioninME @MalnutritionME]

NICE guideline NG206 refers to NICE CG32 when people with #severeME need nutritional support, including oral nutrition support, enteral tube feeding, and parenteral nutrition.
#DietitiansWeek
#EndMalnutritionInME

[Tom Kindlon @TomKindlon]

New blog post from Bateman Horne Center @BatemanHorne talking about orthostatic intolerance. Just because you don't have POTS doesn't mean you don't have some other form of orthostatic intolerance.

https://t.co/OEEAmDw6QF

#MEcfs #OrthostaticIntolerance

[Lindsey 💀🇨🇦 @linds_longcovid]

I will never understand how it's possible to be this sick, for this long, without dying 😞

[Carole Bruce @CaroleBruce17]

It would be so good if Emma Barnett did a follow up to her excellent podcast with @oonagh_cousins There is so much to say about #LongCovid and #ME and why should the pseudoscience people get all the space?

[Anil van der Zee © @AnilvanderZee]

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME.

It is one of the only places where the sickest patients can receive specialised care.

We need this everywhere!!

#pwme #myalgicE #millionsmissing #severeME

[Billy Hanlon @bhanlon15]

BBC: ''Pavement potholes make me feel invisible''

'Bebe Newton, from Ilkeston, Derbyshire, said it was "just pothole after pothole"....due to her conditions, which include fibromyalgia, ME/CFS, Postural Orthostatic Tachycardia Syndrome (POTS)...'

https://t.co/Cvr0TvDZIu

[ME Association @MEAssociation]

Did you know that we have an infographic poster, free to download, full of useful information on ME/CFS made specifically to be shared with healthcare professionals such as GPs? 

Download now: https://t.co/WFwR0ME9cc 

#pwME #MECFS #MyalgicEncephalomyelitis #MyalgicEncephalopathy

[KCIMESG @KCIMESG]

#EndMalnutritionInME

[EndMalnutritioninME @MalnutritionME]

NICE guideline NG206 recognises the nutritional problems people with #ME may face, and the need for dietetic input to avoid malnutrition.
#DietitiansWeek
#EndMalnutritionInME

[Adam @ABrokenBattery]

“Having ME is not a choice.”

A 37-year-old woman with severe #MECFS says the disability assessment process in Switzerland is “simply dangerous and unsuitable for people like us”.

Clip from Swiss TV on severe #MECFS.

[WAMES @WAMESMECFS]

Christine Sweeney created a ‘Grieving the Life Unlived’ meetup for (and with) members of Cambridge ME Group (UK). She shares her inspiration and how she set up the first session for members
https://t.co/5yURkYwYo0

[Carole Bruce @CaroleBruce17]

‘They returned to doctors with exhaustion so profound it resembled neurological disease, with cognitive dysfunction that erased words mid-sentence, with hearts that raced simply from standing up’ Just as #ME patients had for years, only to face disbelief
https://t.co/dOVXQjDLJL

[Open Medicine Foundation @OpenMedF]

OMF’s large-scale biomarker project, BioQuest, is working to incorporate subtype identification into its study. Read more about the project on our website: https://t.co/ebR339ufm0.

#MECFS

[Open Medicine Foundation @OpenMedF]

As ME/CFS is a heterogeneous disease, it’s likely that there are subtypes of the disease to identify. Subtyping might be particularly important for helping guide treatments.

[Adam @ABrokenBattery]

The CDC made a public awareness ad about #MECFS in 2007.

I’m not aware of a similar public health campaign since, despite millions affected and the lack of awareness that exercise can make people worse.

[ThePOTSPostman @ThePOTSPostman]

A lot of healthy people only understand illness through temporary experiences.

So they compare your permanent condition to the worst flu they’ve had, a bad week, burnout, lack of sleep, stress, etc.

And because they recovered from those things, they subconsciously expect you to recover too.

That’s why so many people struggle to understand chronic illness.

They’re comparing a chapter they moved past to a reality you still live every day.