Sandy B

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 drmyhill.co.uk/wiki/patent_fo…

@chriswerge That’s great to hear 👍🏼

I am. It's been the most helpful out of all meds I've tried for Long Covid. Been out it a total of 12 months now and have been able to manage a 5day work week again. Still have pain and aches around the body but the best I've felt in 4 years.

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

@Sam_B_79 @chrissieburgess @envidreamz Yes. No PFO. They found an extracardiac shunt instead. Not sure what that means.

-Long Covid and the Business of Desperation- March will make 6 years. 6 years of being sick, 6 years of being told it was anxiety, 6 years of being peddled bottles instead of answers. There is a storage bin under my bathroom cabinet. It is heavy. White and black and blue caps. Amber glass. Plastic bottles. Promises printed in soft leafy greens and hopeful blues. Immune support, Cellular repair, Mitochondrial energy, Inflammation defense… I bought them with fear in my throat and hope in my hands. Every capsule felt like a lifeline. Every order confirmation felt like maybe this is the one. What I did not know then was that there was a hole in my heart. An actual hole. Blood moving where it was never meant to move. Oxygen slipping through the wrong door. And I picture every pill I swallowed dissolving and disappearing straight through that opening. Falling into a dark space inside my own body. Missing the place it was supposed to heal. A small rain cloud of money and desperation vanishing into nothing. 6 years. Thousands of dollars. Thousands of tears. Countless hours researching protocols at 2 in the morning. Joining groups asking for advice. Reading testimonials and recoveries. Believing strangers with affiliate links because no one else would help me. While I was dismissed, While doctors shrugged, While people I love told me to calm down, While the internet sold me powdered hope in bulk. The supplement industry does not see suffering. It only sees a market. It sees millions of people who cannot breathe right, cannot think right, cannot stand up without their heart racing and dizziness bringing them back down. It sees desperation with a credit card attached. So it prints labels, It funds influencers, Creates AI protagonists. It wraps speculation in scientific language. It sells recovery in capsules. And we buy it because we are drowning and screaming for help while no one cares to hear us. That bin in my cabinet is not just clutter. It is evidence. Of how easy it is to monetize fear, Of how profitable chronic illness can be, Of how capitalism will kneel beside a sick person and whisper, “Try this, try this, try this”… as long as the card keeps clearing. I was not just sick.I was vulnerable.I was gaslit. I was turned into a consumer before I was treated like a patient. And the worst part is not the money. It is the hope turned into distrust, The hope that cracked a little more every time a bottle ran out and nothing changed, The hope that I swallowed over and over, The hope that drained out of me the way those pills did. I am left with a now repaired heart. And a bin full of reminders that when you are sick long enough, someone will always find a way to sell you a miracle. Even if that miracle was never was never meant to reach you.

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

@Sam_B_79 Found one already that treats PFO's and takes my insurance 👍. I have an appt with my other doctor in 3 weeks, will bring this up and see about a referral.

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 drmyhill.co.uk/wiki/patent_fo…

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

@chrissieburgess @Sam_B_79 @envidreamz Mine dips that low when I sleep sometimes too, and I also get breathless and migraines with aura. My bubble echo is in April. Can't wait to see what it shows.

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

@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

1) 🧵 I’m really curious if anyone else experiences the same sensation as me - when I say I feel different intensities of crashing/PEM/poison every single day, this is what I mean - it feels like a wave of something completely toxic and death-like that runs up my chest and sort

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

#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

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:  whitneydafoe.com/donate Learn more about ME/CFS here: whitneydafoe.com/mecfs/whatisme… ================= ================= #mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie

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

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

@lauracollective @Riemerville Thank you

@Sam_B_79 @Riemerville 500mg twice a day. I tried to drop to 500mg to see if I could stabilize but symptoms came back. So back at 500mg twice a day.

As I continue to improve physically, my brain health is declining. What are some of the things that helped you w Covid induced cognitive impairment?

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

youtu.be/MxSkGx643go Sulodexide: Hope for Long Covid.

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

Don’t get mad but I have a question. Have you ever met a neurotypical person with LC and/or ME/CFS?

@lauracollective @Riemerville How much Valtrex are you on?

@Riemerville It feels like a miracle drug as I was really struggling with horrible crashes (mainly mental crashes where I couldn’t think or put sentences together) after minimal exertion. It doesn’t work for everyone but seems to work really well for a subset of long covid sufferers.

@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

Can contrast dye make this worse?? Getting mri soon just being very cautious, already in a severe crash can’t make it worse.

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

dear all, good morning. I’m still available for questions or curiosities on this case, if you have any

Our son loved the outdoors – invisible illness means he now can't walk or talk bbc.in/4sxUCVW

@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

I received my report from my last cardiology appointment, it's laughable some of the stuff he's written, and also I'm discharged without a single test or answer, hes referred me for CBT and told me to venture outsdie to regain my confidence 😂 no mention of what it could even be.

@danaherbert @chrissieburgess @envidreamz Me again! I sent you a dm when you get a chance to have a look