meryl griffith

Biomedical Scientist... Transfusion Science, Haematology, Biochemistry, Microbiology. CFS patient. RRV 🦟 all things ME/CFS & Whole Genome Sequencing

[Babs @halfateaspn]

Has anyone found a way to calm a CNS that’s constantly on fire and triggering severe dysautonomic symptoms?
If anyone has any insight or has found something that genuinely helps, I’d be incredibly grateful to hear about it 🫂💙
#MECFS #MCAS #EDS #DYSAUTONOMIA

[Sarah Nadav @sarahnadav]

Day 18 is coming to a close and I am trusting the process. I feel sure now that vasospasm- cerebral, coronary and Mesenteric are driving most of the illness I called “long COVID” and “ME/CFS”

The most significant improvement is with PEM. Every day I push myself a bit more and every morning I can do a bit more than the day before.

I’m not pushing hard, I’m being gentle with my progress. I am far from healthy but I’m inching closer.

The cluster headache that had pushed me to the brink of madness is practically gone, chest pain is occasional, and my menstrual cramps were no -existent.

I don’t know if this is a solution for everyone, but I was a severe case and “classic long covid”

It’s crazy to me that calcium channel blockers aren’t even being tried for most people who have the same symptoms I did.

HRV is still low, heart rate is high. I still have cognitive fog and couldn’t get much done but I was able to walk my dog in the morning and swim in the sea in the evening.

[Ramy2.0 @Ramyisback]

Drugs that helped me:

Ampligen: biggest by a wide margin, life changing but not accessible

Klonopin: helps sensory overload

Low dose abilify: Helped me get out of a crash years ago

Baclofen: Improvement in some energy

What didnt help me: Literally everything else

[Ian Graves is Neurodetergent. Having a crack @xskinn]

Feeling grateful,I’ve got a roof over my head when many don’t. Ian

[Ian Graves is Neurodetergent. Having a crack @xskinn]

When I’ve got Spotify via the telly, I choose to see the lyrics. And this is what happens when they don’t have the lyrics. Smartarse. HA!😂🤣🤣Ian

[Ex-Evangelical Janeway🖖🥂🔍🏴‍☠️ @XianJaneway]

@LadyChuan @taureanlady5 @MaiZuKitchen I had a hip replacement in May.
The doctor said that post-surgical clots went up 300% since COVID. 💔

[Wenddy 1 #Complex Patients🥺 @Wenddy1234]

@StevePhillipsMD The biggest barrier for complex patients isn't always the illness—it's doctors who mistake the textbook for the limits of medicine.

[Ansam Groshong @AnsamGroshong]

@StevePhillipsMD "Gave up" is still an understatement. They turn on the patients, treat them with contempt, push back against the patients trying to get better, and also blame them for their illness and suffering.

[Steven Phillips, MD @StevePhillipsMD]

Healthy people think the medical system works because it works for them. Strep throat, a broken arm, a routine physical —It handles these well.

Chronic complex illness is a different universe. And there, the medical system fails miserably.

[Steven Phillips, MD @StevePhillipsMD]

In my roughly 30 years of medical practice, I've noticed something really disturbing:

The sickest chronic illness patients often got the least effective care. Many doctors just gave up.

Where there's life, there's hope. Docs should never give up.

[Ror Preston @RorPreston]

@KatyBruce108 One point that stands out from doing this, in combination with the UK ecosystem research is - compared to the global trend - how few research immunologists in the UK seem to be involved with ME.

[Sarah Nadav @sarahnadav]

It’s day 18 on Calcium Channel Blockers for vasospasm and Tricyclic antidepressants for Mast cell activation and pain.

Slept almost 9 hours but it was fitful. My oxygen went down to 87% which is a bit lower than normal, heart rate is high again and HRV is low. Not really sure why.

I take Tramadol for the pain (been taking daily for a year) and now I keep “forgetting” to take it. I’m going to let myself skip doses slowly until I can stop comfortably and completely. I’m not going to stop suddenly as that is unsafe but I can see the vasospasm were the source of pain, and with that treated- my pain levels are much lower in general.

I feel great. I’ve got strong morning energy. I’ve still got to finish paperwork that I didn’t do yesterday.

Going to walk the dog, work on some decoupage and look for ways to add joy.

Adding joy is an important part of my recovery. Music, art, and seeing people has been so hard to do.

So I am trying to add in even small amounts of time because I’ve been in an emotional dark hole along with being sick. Constant pain, and lack of energy makes it almost impossible to enjoy anything.

My goal for the day is Joy and getting some Ace Inhibitors :)

[Charles Spencer @cspencer1508]

Four new black swans for the Round Oval Lake at @althorphouse - they’re still quite young, and their next plumage will be darker. Beautiful Australian birds, enjoying this beautiful corner of Northamptonshire.

[The Prince and Princess of Wales @KensingtonRoyal]

A wonderful afternoon at Ysgol Gymraeg Llundain, a bilingual Welsh-English primary school, where pupils are helping keep Welsh language and culture thriving in London.

Joining the children to send their best wishes to @TeamWales ahead of the Commonwealth Games in Glasgow, and meeting athletes as they prepare to represent Wales on the international stage.

Good luck to all those competing!

[Denis - The COVID info guy - @BigBadDenis]

Norway players have a flu-like virus ahead of Saturday’s World Cup quarter-final against England in Miami.

Manager Stale Solbakken confirmed that the illness has circulated through the squad but is hopeful the situation is improving before the big match

https://t.co/9dYmPIvn4U

[Sarah Nadav @sarahnadav]

It’s the end of day 17 on calcium channel blockers for coronary vasospasm and I think it’s time for me to say that this is WORKING for a lot more than chest pain.

The good:

My menstrual cycle is over and it was nothing. I didn’t have any cramps and didn’t end up in the ER which is a huge deal for me. Ladies- spread the word- calcium channel blockers stop uterine smooth muscle from cramping and is life changing.

PEM is basically gone. If I push myself, I’m not paying the next day. I’m waking up with my best energy in the morning.

My step count is up by A LOT and I’ve been swimming in the sea for 20 min twice this week.

And despite CCBs being meant to lower blood pressure, mine is stable and fine even with POTS.

The down:

I’m getting high heart rate notifications while sitting. It’s not crazy high- but it’s not great.

My feet are red and swollen like watermelons. It’s hard to wear compression stockings in the summer but the edema is awful that I might have to.

It’s still early days

[Sarah Nadav @sarahnadav]

I walked my dog this morning and realized that since the weather go hot, I’ve been like a vampire that only comes out at night. My kids usually do most the dog walking as I haven’t been able to.

I only leave my house during the day to go to a doctors appointment.

This morning it’s bright , hot and sunny. 29 degrees and I was Ok. I walked a kilometer, and even walking uphill or back up the stairs was possible.

For context, a month ago I was barely able to leave my bed. All the shades were drawn, I was in so much pain that I was crying constantly. It just didn’t feel possible to exist or continue living.

Coronary Vasospasm torture. It’s when the arteries clamp down when triggered- and a trigger can be stress, amphetamines, smoking, and triptan migraine drugs. Beta Blockers make it worse!

I was taking small doses of attent (ADHD) to help me focus and beta blockers so that was making me worse! 🥴

But it’s more complex because you can be triggered during the day- but the spasms don’t start right away, or they can be triggered for hours at a time.

The weirdest is that spasms can start at rest, or at night in bed or wake you up from sleeping. It is like having mini heart attacks, because coronary blood flow is cut off which causes ischemia.

Ironically, if you have coronary chest spasms bad enough to make you feel like you should go to the hospital- the episode will most likely resolve before you get an EKG or between one EKG and the next.

This is how people get labeled as “frequent fliers” or malingering.

The scary thing is that it can get strong enough for long enough to be a real heart attack that kills you!

I’ve been dismissed for years as this has continued to get worse, with prescriptions for medications that made it worse.

Now, here I am - getting better!

I guess for most people a 15 minute walk in their neighborhood isn’t such a huge accomplishment.

For me- it’s such a big deal.

[Daniel Missailidis, PhD @DanMissailidis]

Amazing to get a new experimental result that looks too good to be true, but ends up being correct when triple checked.

A very good day and a baby step closer.

This is not to make hype, but to share that on the most unassuming days we stumble across new knowledge and progress.

[Sarah Nadav @sarahnadav]

It’s day 17 of taking calcium channel blockers and tricyclic antidepressants for pain. Yesterday my pain doctor raised the dose from 10 to 25mg

I don’t think I have slept 10 hours since I was a teenager.

TCA has H1 antihistamines so this could be helping my Mast Cell Activation.

I feel great- another day of strong morning energy. This usually wears off by 1pm.

HRV has been low, steps have now gone up to 4-5000 per day. It feels like it happened slowly but what really changed was that I am not getting PEM after a day where I push myself.

I’m still getting chest pain and migraines but few and far between. So I am taking 1 CCB pill in the morning and one at night instead of both at night. Hopefully that will work.

Sunlight and noise are not bothering me as much.

[meryl griffith @meryl_mg]

@KristinaRevay Good idea… though I have a class switch problem that showed itself with Hep B vaccination

[meryl griffith @meryl_mg]

Going to have Shingles vaccine & Tetanus vaccine update. Waiting couple of weeks for Dexmethsone to clear from system.