Sandy B

[Sandy B @Sam_B_79]

Why are researchers into ME/CSF not looking more closely at the work of cardiologist Dr Paul Cheney & Dr Myhill theory about PFO and #MECFS

https://t.co/aKpVmnk3Eo

[Ciara Wright PhD, Positive Nutrition @CiaraGlenville]

Did a podcast with Nutritional Medicine Institute on #LongCovid #mecfs on YouTube, Spotify etc. It’s far from perfect, I just hope that I have done this amazing community a good service by advocating for better understanding of PEM &lack of treatments etc

https://t.co/4nGJxWX4y5

[Sandy B @Sam_B_79]

@chriswerge That’s great to hear 👍🏼

[Sandy B @Sam_B_79]

@danaherbert @chrissieburgess @envidreamz Ok, they can cause very similar symptoms as PFO. Have you been given a plan to sort it?

[Sandy B @Sam_B_79]

@LillyDeeeeee @LillyDeeeeee did you ever get tested for a PFO?

[Sandy B @Sam_B_79]

Why are researchers into ME/CSF not looking more closely at the work of cardiologist Dr Paul Cheney & Dr Myhill theory about PFO and #MECFS

https://t.co/aKpVmnk3Eo

[Sandy B @Sam_B_79]

@danaherbert @chrissieburgess @envidreamz @danaherbert did you have your bubble echo?

[Tom Kindlon @TomKindlon]

Delighted to get this coverage in the Sunday World, one of the newspapers with the largest readership in Ireland

#MEcfs #PwME

[Sandy B @Sam_B_79]

@kirstler31 I get a similar sensation, I know exactly what you are describing but I don’t get it to the extreme extent that you get it. I have many hypotheses as to what is causing it for me anyway

[Janet Dafoe @JanetDafoe]

We need help! There is SO MUCH SUFFERING and so little research funding. We are losing patients to suicide because they lose hope.

[Ben H @benh_mecfs]

#MEAwarenessDay

10 years 99.9% bedbound.

15 years since the illness began.

23 y/o to 38 y/o in the blink of an eye, but the extraordinary suffering has been felt in every second of those years.

And there are thousands like me, or worse.

#MECFS #ME #MEAwarenessDay

[Whitney Dafoe @DafoeWhitney]

We Need Your Help

Imagine starving to death and being allergic to all food.  And everyday trying to decide between starvation and a deathly allergic reaction.  ME/CFS is like an allergy to energy expenditure.  Imagine everyday trying to decide between doing something that makes you feel alive or deathly sickness.  The more you do, the less alive you feel.  And the less you do, the less alive you feel.  And the more you do, the less you are physically capable of doing.  That is ME/CFS.  Everyday.  For decades.  

But if you don’t have ME/CFS, and are not allergic to life itself, you could decide right now to help us.  And it won’t cost you anything but an extra work day, or one less toy or luxury, or some other small sacrifice in an otherwise life full of blessings and opportunity.  Which I would not want to take away for a second.  But a small sacrifice from you would go a long way towards helping people living in absolute hell.  

Go here to donate to ME/CFS research: 
https://t.co/Ru1nyvjQqq

Learn more about ME/CFS here:
https://t.co/Umhh7me9eO

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#mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie

[Sarah O'Connell @SarahOC_MECFS]

My family has 5 members with #MyalgicEncephalomyelitis over 3 generations; my mother, me, my sister & my two children.
When my son developed #LongCovid & ME I was beyond heartbroken. He is now 11 & attends school part-time.

Pls support #MEAwarenessDay

#pwME #MEKills #MECFS

[Lizzy H @hopefullizzy]

Today is #worldMEday and part of #MEawarenessweek

I’ve had this horrific disease since I was 14yrs old. A fit, health and active teenager, until I got a severe gastric flu, and never recovered.

For the last 7yrs in various ways my health has been declining, until near death

[Sandy B @Sam_B_79]

@lauracollective @Riemerville Thank you

[Sandy B @Sam_B_79]

@chriswerge @chriswerge are you still taking the Sulodexide and if so is it still helping

[Sandy B @Sam_B_79]

@jossyoursalad69 No.. even if they themselves don’t realise it. Neurodivergent & hypermobile always

[Sandy B @Sam_B_79]

@lauracollective @Riemerville How much Valtrex are you on?

[Sandy B @Sam_B_79]

@iatrogenicse I have had multiple MRI’s with contrast and it didn’t have any affect on my condition just drink plenty of fluids afterwards

[Sandy B @Sam_B_79]

@surf4children What about Sulodexide? Previously a study showed it helped

[BBC News (UK) @BBCNews]

Our son loved the outdoors – invisible illness means he now can't walk or talk https://t.co/uDE0Pf7Dak

[Sandy B @Sam_B_79]

@PlanetEarth_HD Have you had a bubble echo or TEE to rule out PFO yourself? It runs in families and can be a cause of some of your issues