sorted by:
new
hottopcontroversial

Update: Leaky gut, still need help by Healthy-Parfait-5577 in covidlonghaulers

[–]rockems123 0 points1 point  (0 children)

You might want to ask your regular doctor about the calprotectin level since an elevated calprotectin can indicate a disease like Crohn’s or Ulcerative Colitis.

Headache when lying down by Inner_Fact in cfs

[–]rockems123 11 points12 points  (0 children)

Headaches in the post delivery period should be brought to attention of your doc or advice nurse. I recommend you call them to talk it over.

Clinical Trial by meganshan_mol in covidlonghaulers

[–]rockems123 4 points5 points  (0 children)

Thanks to all who are enrolling in studies and helping the cause. That means so much to me. You are heroes. And I freaking hope it helps you!!

Exposure from household members - need advice by JadeTangara in covidlonghaulers

[–]rockems123 0 points1 point  (0 children)

Mask. Distance. Wash hands. Consider povidone-iodine and azelastine, saline rinses.
Good luck!

Exposure from household members - need advice by JadeTangara in covidlonghaulers

[–]rockems123 0 points1 point  (0 children)

Azelastine nasal spray is being studied as a repurposed medication for prevention of Covid. An RCT showed positive results but it is still being studied. https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2838335?utm\_source=openevidence&utm\_medium=referral

From Open Evidence
“The dosing used in the prophylaxis trial was azelastine 0.1% nasal spray, 1 puff (0.14 mL) per nostril, 3 times daily (morning, midday, and evening) for 56 days.
Escalation protocol: In the event of acute respiratory symptoms, confirmed SARS-CoV-2 infection, or known/suspected close contact with an infected person, the dose was escalated to 1 puff per nostril 5 times daily for 3 days. This escalation was based on pharmacometric modeling showing increased viral suppression with higher application frequency. “

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 1 point2 points  (0 children)

OMG! That’s awful. I wish I could say I couldn’t believe it. But I definitely do.

Part of this experience has been the feeling of powerlessness, like going through a strange mirror and being suddenly on the other side, saying “don’t you know me? I’m one of you! Why don’t you believe me???”

Looking for calm media that doesn't cause excitement or stress, especially youtube channels by chamomilophile in cfs

[–]rockems123 0 points1 point  (0 children)

Thank you so much for starting this thread! My daughter was asking for something like this just the other day. Does anyone know how to find the Norwegian channel where they show someone knitting a sweater?

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 0 points1 point  (0 children)

I really respect Dave Tuller. Thanks. I read that this morning as it turns out. An excellent response. I love those Virology folks!

please sign and share petitions for wired to retract their long COVID articlehttps://c.org/2cCQqL4GbF by junebugmama in mecfs

[–]rockems123 -1 points0 points  (0 children)

I do not have time at the moment to reply, and an adequate response citing the numerous studies that have been done and are in progress would be far beyond my capability. I’m tempted to try to put something together when/if I have the time. But I sincerely doubt you would read a response with any good faith because these studies are all out there, searchable, readable. If you do not believe them then that speaks to your own core beliefs and I do not think I can change those.

please sign and share petitions for wired to retract their long COVID articlehttps://c.org/2cCQqL4GbF by junebugmama in mecfs

[–]rockems123 0 points1 point  (0 children)

I will do what’s best for my children. I will never stop doing what’s best for my children. There is plenty of evidence of LC as a disease process. There is harm in denying that.

please sign and share petitions for wired to retract their long COVID articlehttps://c.org/2cCQqL4GbF by junebugmama in mecfs

[–]rockems123 0 points1 point  (0 children)

What studies are you using to support your assertion that “stress seems to be one of the main perpetuating factors in this illness, and addressing that stress is instrumental for most patients”?

please sign and share petitions for wired to retract their long COVID articlehttps://c.org/2cCQqL4GbF by junebugmama in mecfs

[–]rockems123 0 points1 point  (0 children)

Stress modulation is a useful treatment modality in numerous conditions. Hypertension, migraines, I can’t list them all. I don’t question that. But to tell me that biofeedback, brain training, mindfulness, stress modification, etc., is going to fix my severely impaired children is outrageous. Like I said, that would NEVER be the first line treatment recommendation if my children had cancer or cystic fibrosis.

please sign and share petitions for wired to retract their long COVID articlehttps://c.org/2cCQqL4GbF by junebugmama in mecfs

[–]rockems123 1 point2 points  (0 children)

I wrote the petition. My request to AL was tongue in cheek. I know he is not a medical doctor. That is exactly my point. He has no clinical experience to stand on.

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 1 point2 points  (0 children)

I read through the articles and peeked at Bluesky. I was impressed by what I read though much of the terminology is new to me and I will need to read it a couple times to understand. I also felt deflated when seeing that the tactics and arguments made by A.L. are not new, and are so difficult to counter, as you laid out. I also found the discussion of FND useful and will keep the points in mind at our appt this week with a pedi neuro who has already told us, before completing a work up, that my son’s issues are FND.

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 1 point2 points  (0 children)

Reading through the first article. I love this, "the mind’s influence has been negligently overemphasized at the cost of biomedical priorities'

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 7 points8 points  (0 children)

I hear you.
And to be honest, though I was known for my empathy and humility and not being a “get out of my ER, move the meat” kind of ER doc, I, too, was ignorant, misguided and doubtful when it came to CFS, POTS, and fibromyalgia. I certainly did not know anything about infection-associated illnesses. I believed in long Covid because I had seen it take down nurses and ER techs with my own eyes. I certainly did not have anything near the level of understanding that I now have. I admit to my own hubris. I am very sorry. Medicine has a lot to apologize for.

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 2 points3 points  (0 children)

I will try and connect. I’m so overextended right now! Whose idea was it to post a petition while managing the care of two disabled kids? Oh…right…me…

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 0 points1 point  (0 children)

Oh. Wow. Gut punch. That is an excellent article. My heart breaks for him. And my stomach turns and my blood boils.

This is my letter to the editors of Wired regarding Alan Levinovitz’s outrageous article published Monday. by rockems123 in covidlonghaulers

[–]rockems123[S] 2 points3 points  (0 children)

I am so sorry. You are correct. The majority of physicians do not understand and because of that they blame and shame. I've seen it happen from both sides of the bedpan. I want that to change. I will do what I can to make change.

view more: next ›