#SFPN - Twitter Hashtag

about 2 months ago

一昨日(6/6)は埼玉フードパントリーネットワーク（SFPN）定期総会に参加。加盟団体は約80団体まで拡大中🎉 草場理事長から直接議長を依頼いただき、お引き受けしました。認定NPO法人取得・ファンドレイジング強化・事務局長設置など、団体としての大きな前進が続いています💪 #SFPN

koshiichi_fp's tweet photo. 一昨日(6/6)は埼玉フードパントリーネットワーク（SFPN）定期総会に参加。

加盟団体は約80団体まで拡大中🎉 草場理事長から直接議長を依頼いただき、お引き受けしました。

認定NPO法人取得・ファンドレイジング強化・事務局長設置など、団体としての大きな前進が続いています💪

#SFPN https://t.co/meToyu5Mvt

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Tom Kindlon @TomKindlon

over 2 years ago

Small Fibre Polyneuropathy in Interstitial Cystitis/Bladder Pain Syndrome: an Important Feature of the Non-Bladder Centric Systemic Pain Phenotype https://t.co/JFJ8cf4LUo "Race, HL status, #ChronicFatigueSyndrome, #migraines and diabetes mellitus...correlated with #SFPN" #MEcfs

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Victor Kahn @Kahn_Victor

over 2 years ago · Montpellier

Immensément fier ! 😁 Le premier Sommet Français du No-Code a eu lieu à #Montpellier la semaine dernière, il a fait salle comble dans notre Halle de l'Innovation ! Un bel évènement co-organisé par @Montpellier3m @La_Melee_Mtp, @Digital113_, la Région @Occitanie et le #SFPN !

Kahn_Victor's tweet photo. Immensément fier ! 😁

Le premier Sommet Français du No-Code a eu lieu à #Montpellier la semaine dernière, il a fait salle comble dans notre Halle de l'Innovation !

Un bel évènement co-organisé par @Montpellier3m @La_Melee_Mtp, @Digital113_, la Région @Occitanie et le #SFPN ! https://t.co/0ARpWobNLa

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This is M.E. tweeting @ThisisMEtweety

over 2 years ago

Anyone with #fibro #LC or #pwME in UK who have a dx of #SFN or #SFPN how did you get it? Symptomatically I’m a good fit; I’ve seen rheum & neurology, but no one tests for SFN.

Neuro Sjogrens @NeuroSjogrens

over 2 years ago

Nice article w links looking at Oaklander's SFN work. Posits multiple small fiber nerve populations wc can be differentially affected. A "myovascular SFN" may shunt blood from muscles but can have negative skin biopsy. More study on multiple small fiber systems in the body.

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Alice Fricker💘 @FrickerAlice

almost 3 years ago

Does anyone have a snappy comeback when your GP blames all your complex problems/conditions on deconditioning? #verysevereME #MCAS #SFPN #PoTS #pwME #MyalgicE

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Alice Fricker💘 @FrickerAlice

about 3 years ago

Anyone who has Severe small fibre polyneuropathy or any kind of severe neuropathy, have you had a PICC line and could you manage it? Alice is hypersensitive to touch. She can’t wear underwear or clothes apart from a t-shirt, she can’t be hugged. (1/2) #pwME #VerySevereME #SFPN

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Alice Fricker💘 @FrickerAlice

about 3 years ago

Alice #VerySevereME has had a chronic bladder condition for 6yrs. Told it’s either #SFPN #MCAS or IC.We are looking into #TetheredCord for this. Also looking into CranioCervical Instability & #Chiari bc of other symptoms. Any advice out there?Please. Esp with Tethered Cord? #CCI

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Alice Fricker💘 @FrickerAlice

over 3 years ago

Has anyone ever been offered an NHS Continuing Healthcare Needs Check? Alice’s G.P would like Alice to have one. We are unsure & a bit uncomfortable with the idea. We’re not sure what it involves. #VerysevereME #pwME #severeme #PoTS #SFPN

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Alice Fricker💘 @FrickerAlice

over 3 years ago

We pray it never gets to that. VERY thankful for WW (specialist/consultant) he supports us 100% and will back our fight all the way. GP is supportive but out of her depth & also appalled by Alices treatment. #SevereME #SFPN @gmcuk @DHSCgovuk @NHSuk

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Alice Fricker💘 @FrickerAlice

over 3 years ago

Repeatedly been told "we can't help you" “ I don't understand why Alice came in" "If your specialist is as amazing as you say...." Our M.E consultant is the best in the country. He can do very little when the Hospital Drs ignore him. #pwME #SevereME #VerySevereME #SFPN #MECFS

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Alice Fricker💘 @FrickerAlice

over 3 years ago

We have no words, yet so many. Will try to update soon. The NHS is a sh*t show. But we already know that when it comes to #pwME However, we just got told they are going to talk to my M.E consultant. Praying it goes well. #VerySevereME #severeme #MyalgicEncephalomyelitis #SFPN

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MGupta PhD (she/her) 🌻🦓 @mguptaphd

over 3 years ago

I’ve recently been having severe shaking, spasming, vibrating sensations throughout my legs and arms. Can’t see, just feel them. Corresponds with the #SFPN burning and tingling symptoms. Anyone else get this / have any advice? #NEISVoid

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Alice Fricker💘 @FrickerAlice

over 3 years ago

My Dad's Birthday was yesterday. One thing that I tried to do was give him a quick hug. Hugs rarely happen thanks to #SFPN He was so content. However, the feeling lasted up to 20hrs It's unbearable. I want to rip at my skin. Anyone similar? #SevereMe #pwME #MECFS

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Bateman Horne Center @BatemanHorne

over 3 years ago

Millions need access to informed medical care. If you are able, make an affordable gift today! 🌱 https://t.co/HW3KV3v5iS #MECFS #longcovid #fibromyalgia #clinicalcare #giving #dysautonomia #mcas #sfpn #medicaleducation #MedEDMatters

BatemanHorne's tweet photo. Millions need access to informed medical care. If you are able, make an affordable gift today! 🌱 https://t.co/HW3KV3v5iS

#MECFS #longcovid #fibromyalgia #clinicalcare #giving #dysautonomia #mcas #sfpn #medicaleducation #MedEDMatters https://t.co/17Cfziw0zu

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Bateman Horne Center @BatemanHorne

almost 4 years ago

2/2 to #healthcareprofessionals as part of the Long COVID and Post-viral Syndromes ECHO. https://t.co/XkGapmT3Ol #MERCatBHC #MillionsMissing #MyalgicE #OrthostaticIntolerance #PASC #hEDS #OI #dysautonomia #SFPN #MCAS

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Deb K @DebK_hEDS

about 4 years ago

@MrsProctor2010 @Kamalapearl @KevinJTraceyMD Almost 15. Over 10-years in chronic pain. My dream is that the pandemic brings new research & answers to lots of conditions like #EDS #SFPN #Dysautonomia and #MECFS that were formerly under the radar and not financed or studied enough.

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Deb K @DebK_hEDS

about 4 years ago

Day 3 of isolating our son in the guest room for Covid. I feel like we are working (and he’s living) in a luxury hotel with AMAZING room service! Two more days then hopefully he’s back to school!! #covid #pots #eds #mcas #sfpn #postviralfluA #FLCCC

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Bateman Horne Center @BatemanHorne

over 4 years ago

Join our support group on TUESDAY, April 19th for a discussion about NAVIGATING ROMANTIC RELATIONSHIPS. 12 PT/ 1 MT/ 2 CT/ 3 ET Register: https://t.co/9oew3gPDZE #BreaktheIsolation #MECFS #FM #LongCOVID #Dysautonomia #PVS #POTS #NMH #MCAS #SFPN

BatemanHorne's tweet photo. Join our support group on TUESDAY, April 19th for a discussion about NAVIGATING ROMANTIC RELATIONSHIPS. 12 PT/ 1 MT/ 2 CT/ 3 ET Register: https://t.co/9oew3gPDZE #BreaktheIsolation #MECFS #FM #LongCOVID #Dysautonomia #PVS #POTS #NMH #MCAS #SFPN https://t.co/uFkaGLCiyu

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Deb K @DebK_hEDS

over 4 years ago

@AlikaMD Tonight the mysterious flu WAS the flu, and it’s a bad one this year, at least for my kiddo (and me), not so much dad, since he actually got a flu shot 🫤 #LongCovidKids #POTS #EDS #MCAS #SFPN

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Bateman Horne Center @BatemanHorne

over 4 years ago

Join our support group on TUESDAY, April 12th for a discussion about PARENTING WHILE SICK. 12 PT/ 1 MT/ 2 CT/ 3 ET Register: https://t.co/2PbiiY9pFG #BreaktheIsolation #MECFS #FM #LongCOVID #Dysautonomia #PVS #POTS #NMH #MCAS #SFPN

BatemanHorne's tweet photo. Join our support group on TUESDAY, April 12th for a discussion about PARENTING WHILE SICK. 12 PT/ 1 MT/ 2 CT/ 3 ET Register: https://t.co/2PbiiY9pFG #BreaktheIsolation #MECFS #FM #LongCOVID #Dysautonomia #PVS #POTS #NMH #MCAS #SFPN https://t.co/1fUCwT9qoz

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