Suffolk & NE Essex ME

Norfolk, Suffolk & NE Essex biomedical ME Service Development & anything about ME that catches my eye.

[Suffolk & NE Essex ME @ME_Suffolk]

The questions to ask #pwME is not "what can you do?", but
1. how long do you need to rest before planned activity?
2. how long does it take to stabilise your symptoms after any activity?
3. with rest, can you get all your symptoms back to their pre activity level?
#MECFS

[Suffolk & NE Essex ME @ME_Suffolk]

@ruskin147 Our Bosnian rescue still has nightmares, only occasionally now, thank goodness, but in the early days it was pretty frequently. We've had her 6 years now and I suspect those nightmares will never totally go. But so many good days we've had.

[Suffolk & NE Essex ME @ME_Suffolk]

Excellent severe M.E. awareness video from @AnilvanderZee

Day to day life living alone (apart from the cat Gregor 🐾) with severe M.E
https://t.co/d1gP04RQtg

#MECFS #MECFSAwarenessDay

[Suffolk & NE Essex ME @ME_Suffolk]

@MEAssociation I get free prescriptions on the grounds that I have have "a continuing physical disability that prevents you going out without help from another person and have a valid medical exemption certificate (MedEx)" GP certifies on FP92A form for me. https://t.co/3H91PnadoC

[Suffolk & NE Essex ME @ME_Suffolk]

The Sunflower Conversations
ME/CFS and Long Covid with Russell Fleming, ME Association

45 minutes long & includes a transcript. An easy listen. Nice balance of general information, Russ' lived experience, & work of the MEA.

https://t.co/TrBrScUB0F

#MECFS #pwme @MEAssociation

[Suffolk & NE Essex ME @ME_Suffolk]

Good thread on #LongCovid and #MECFS . Worth a read.

[Suffolk & NE Essex ME @ME_Suffolk]

Thanks for posting @TomKindlon

Well worth a listen. Good balance between YP Lived Experience, Carer and information for GP's.

#MECFS

[Tom Kindlon @TomKindlon]

🧵
NZ GP education podcast on ME/CFS with a focus on young people. 40 minutes

I haven't listened to this myself so far but a critique I read suggests it could be quite good.

https://t.co/cP59XvoJqy

#MyalgicEncephalomyelitis #MedEd #ChronicFatigueSyndrome #MEcfs #CFS #PwME

1/

[Suffolk & NE Essex ME @ME_Suffolk]

Short survey. Includes #MyalgicEncephalomyelitis and #CFS as neurological conditions.
#MECFS
@MEAssociation

[Brain & Spine Foundation @brainspine]

Do you feel listened to by health and care professionals? Now is the time to get your voice heard. Complete the next edition of the #NeuroLifeNow survey: https://t.co/qP6ScTMGsM

@NeuroAlliance #WeAreNeuro

[Suffolk & NE Essex ME @ME_Suffolk]

Time is really tight, engagement ends on 22 February.

Here is a link for direct comment on M.E. and CFS Services on aspects of the Joint Forward Plan
https://t.co/joserYsoYG

#MECFS #pwME @MEAssociation @SNEEICB_IES @SNEEICB_NEE @SNEEICB_WS

[Suffolk & NE Essex ME @ME_Suffolk]

1. The NHS Suffolk & NE Essex Draft 5 Year Joint Forward Plan has been published.

#MECFS has been included as a priority in the draft. This may change. Have your say!

Blog post: https://t.co/uMIIfLbI8h

#MECFS #PwME
@SNEEICB_IES @SNEEICB_WS @SNEEICB_NEE
@MEAssociation

[Suffolk & NE Essex ME @ME_Suffolk]

2. Direct link to Draft 5 Year Joint Forward Plan
https://t.co/74oV7jxf0s

Comment if you can.

Other NHS areas will also be preparing their Draft Forward Plans, what happens here may influence other IBC's.

#MECFS #PwME
@SNEEICB_IES @SNEEICB_WS @SNEEICB_NEE
@MEAssociation

[Suffolk Local Offer @Suffolk_LO]

Calling all children and young people with SEND!
As you might know, we run something called “Time to Listen”, where parents and carers can meet senior leaders and talk about their experiences of SEND in Suffolk, but we’d like to give you the chance to take part, too. (1/3)

[Suffolk & NE Essex ME @ME_Suffolk]

From 2019, but worth a retweet. Article about children with M.E. in Primary school.
@TinaRodwell1

[Suffolk & NE Essex ME @ME_Suffolk]

Now got to have a hunt in the bed for my Ivabradine tablet which pinged out of the blister pack into orbit.

Wish I had that amount of energy. Certainly can't move that fast!

#MECFS #POTS #pwME

[Tina Rodwell #TeamPatient🇺🇦🕊🌎🕊💞 @TinaRodwell1]

Disgusting downplay of the reality of ME by @NHSEngland no mention of PEM
Need to do better is an understatement NHS Scotland is much better

[Suffolk & NE Essex ME @ME_Suffolk]

We are exploring change to the ME and CFS pathway for adults, and children and young people, in line with the new NICE Guidance published in 2021.

#MECFS #pwME #NHS @MEAssociation @SNEEICB_IES @SNEEICB_WS @SNEEICB_NEE

https://t.co/Uq3hQwRzaV

[Suffolk & NE Essex ME @ME_Suffolk]

Here is your opportunity to help shape the proposed M.E. & CFS Service in Suffolk & NE Essex

If you can, please complete this survey. Quick and easy to do. Thanks!
#MECFS #pwME #NHS @MEAssociation @SNEEICB_IES @SNEEICB_WS @SNEEICB_NEE

https://t.co/qQopRBU7gX

[Suffolk & NE Essex ME @ME_Suffolk]

A short poem about 25 years of living with severe #MyalgicEncephalomyelitis

Definitely resonates. Hope for better days to come.

#MECFS #myalagicE

[Hannah Davis @bluecat_1984]

A Poem about life.
.
#Poem
#ME #MECFS #pwME
#25Years
#StillLiving #StillSmiling

[Suffolk & NE Essex ME @ME_Suffolk]

Good to see articles about the overlap between M.E. and Long Covid.
#MECFS #pwME #LongCovid https://t.co/mXPLgxkhxb

[Suffolk & NE Essex ME @ME_Suffolk]

@parkincarrie @MEAssociation That's great, thank you 🙂

[Suffolk & NE Essex ME @ME_Suffolk]

@parkincarrie Do complete our patient survey if you haven't already done so: https://t.co/qQopRCbI8v

We've already got some really useful info from those who have kindly used their energy to let us know what is important to them in a new M.E. Service @MEAssociation #pwME #MECFS

[Suffolk & NE Essex ME @ME_Suffolk]

@parkincarrie We are currently redeveloping the M.E. Service in Suffolk & NE Essex. We know how important benefit claims are for financial independence, & are exploring ways of offering support for claims as part of the new service. No support from the current M.E.Service ☹️ #MECFS #pwME