u/LC_support_4all

A cousin of mine (sans Long Covid) recommended this to help with neuroplasticity. I'm too brain foggy right now but intend on doing some extensive research on this, just figured I would ask for personal experiences.

Thanks peeps🖤🤘

I've been seeing an increase on divisive behaviour on platforms line X (I know... dumpster fire, but a ton of researchers are still there) about a particular crew pushing for Long Covid ONLY language/research, etc. and attacking/ blocking/ gaslighting anyone who disagrees or dares mention other co-related conditions line ME.

It's been driving insane for years, not only for the time and energy wasted on those ineffective conversations, but the LAST thing we need is more division.

We need to consider a few things: it's fairly easy from our suffering and misery to point out weaknesses, complain about so many things out of our desperate need for help but the realization we unfortunately live in an unfair, burocratic world full of processes, agendas etc.

Yes, there are a lot of bad actors who want to grift, create more division, chaos, take advantage, whatever...but there's also some people who are legitimately trying to help and get bombarded with unnecessary attacks that are only causing more harm.

We are dealing with a complex condition whose symptoms overlap many already existing conditions. We are living in a world where medical curiosity doesn't exist that much anymore, and the amount of knowledge needed to properly diagnose complex conditions, especially Long Covid, is becoming more challenging by the second.

We can't blame all specialists for (mis) diagnosing someone with ME when the only diagnostic tool for ME is meeting certain symptom criteria on a check list that's not attached to anything concrete that confirms you have ME.

I understand that misdiagnosis like these can be and are dangerous, especially for instance if the person instead of ME, actually had a combo of MCAS and Dysautonomia. It's vey complicated to find doctors who can properly diagnose those conditions as well, but at least those diagnosis have a higher chance to being attached to data through testing.

There's also the issue about Long Covid having it's own root cause issues that are nearly impossible to find because nothing shows up on tests, and just because the symptoms are similar to other conditions doesn't mean we necessarily have those. And therein lies the importance of having Long Covid *exclusive* research, but also be able to encourage and share research data with other complex conditions to compare notes and narrow down better diagnostic and treatments for each of these conditions.

I know what's being demanded is what's being desperately needed, but we need to start with what we CAN do given the circumstances. Otherwise we are burning rubber (energy) spinning the wheels over discussions that are leading nowhere while the number of people suffering is increasing exponentially.

There's infinity of injustices, inbalances, medical trauma, etc. we would never end listing the (very valid) negatives. Let's try to focus on how and where can we start given the landscape and be smart about it. What common grounds we share where we can work together? There's always been strength in numbers and collaborations.

If we demand all radical changes on all systems at once we'll never get anything because as we've experienced, we keep getting dismissed. Let's be more strategic so we can get what we need for those of us suffering, for the unfortunate new ones joining the club, and preventing others from the same fate (AND us from getting worse with each reinfection).

Rant over.

This has got to be one of the most difficult posts I've had to write in a long time. As unfortunately I was given notice by her mother that a beloved member of our FB Long Covid community, PAOLA GARZA, left this world last weekend.

Paola was a young, healthy, passionate woman. She came to Vancouver Canada to study English and a certificate in design with the help of her family and her savings. She then went on to open her own small business of graphic design to help support our Mexican Community.

She had huge dreams of having a successful business, getting married to the love of her life, starting a family (she wanted LOTS of kids) and just leading a happy, peaceful life.

At the age of 27-28 she got sick with what turned out to be Covid, after getting a cleaning lady to come help clean her place, and the she had "allergies". She spent a year trying to get medical help, there was none. No family Dr. taking new patients, and walk-in clinics doing the usual gaslighting we all know too well. Her health was not great, she had a lot of neurocognitive symptoms, fatigue, trembles, pains... she tried to work when she could so she wouldn't lose the business she had work so hard to build.

Eventually her unofficial fiancé left her because she was being "hysterical" and "dramatic with her precautions", "complaints of pain and other symptoms"...

After more than a year when she felt stronger, she decided to go to a friend's BBQ as she was always a social butterfly and had been isolated too long. She thought it was safe as it was outside, no one masked, no one was apparently sick, no "allergies".

Two days later she felt the worst she's felt yet. Her and two more friends got Covid. Paola's health declined again, her roommate left on account of her being "overly demanding" on taking Covid precautions and the roommate never took Covid seriously. Paola's mother came from Mexico as Paola couldn't live alone anymore. After several months her mom had to go back to Mexico and took Paola with her back home.

It was devastating to her to know that her schooling, finally being a Canadian resident, her business, everything she'd fought so hard for, could be lost. But her priority was getting her health back and coming back to her life in Canada.

To her surprise, her family had moved to one of the highest cities in the world at almost 2,700 mts above sea level. The altitude's impact on her health was almost immediate.

She was taken to some of the best hospitals in Mexico City, where they found anomalies, but nothing to explain all that was happening to her. They offered her no treatment as "they didn't know how to help". Another song we all know too well.

With her doctors' dismissal, her family gave one last hurrah. They took Paola to Catemaco, Veracruz where natural healers and "witches" tried to work on her. Nothing happened and nothing could be done.

That was the nail in Paola's coffin. Her family turned against her, mocking her, telling her she's "exaggerating", "being dramatic", "hypochondriac", "attention seeking" and an "embarrassment" to the family every time she would go out with a mask.

Her health continued to deteriorate due to lack of medical attention, from negligence of her family and the overall altitude and climate she was now forced to live in. She was completely dependent on her family and unable to move on her own.

All her friends abandoned her too. The only people she could count on in real life were an uncle and one of her cousins who would always spend time with her in her room masked and got her a HEPA filter. She relied so very much on support groups where she would try to get help, guidance, anything for her symptoms while trying to help others.

She was also a victim of abuse, harassment, and vicious attacks in a Canadian FB group where she was looking for support and help. They wore her down when she was trying to help others, to share important events with others in the community and all her efforts were not only blocked, they were criticized in a very deep and hurtful manner.

She was always willing to share everything and anything that would help our community, the events held for Int. Long Covid Awareness Month, webinars, research studies, posts etc. in hopes others would believe this is real and in hopes no one would suffer the abuse, abandonment and negligence her family had bestowed upon her.

Paola was a kind, warm soul with a big heart and even bigger spirit. She was robbed of every single chance of getting better. No matter the advice she got in groups either from research or personal experiences, everything she showed to her family to try was met with negativity, mockery, and the always egocentric "how do THESE people know better than the BEST specialists in Mexico?".

She fought, with all she had, even though everything and everyone around her kept chipping away her willingness to keep going. Her cries were drowned in silence, her pleas for help ignored, her desperation to help unify people so that more could be heard and helped were met with narcissistic tendencies and passive-aggressive responses.

She sent me a last message before she left, thanking everyone who ever supported her, shared warm words, to everyone who treated her like a person desperate for help and tried to help her. She told me of how so many were willing to just talk, be there for her venting, for her pain, for her tears and cries of desperation. She thanked everyone who keeps fighting for themselves, and others.

I can't express the pain I've felt, the desperation, my soul's been crushed, the feeling of helplessness, the impotence, the red-hot ANGER.

We MUST keep trying to unify our community, in Canada, in Mexico, everywhere in the world so that this stops happening. We MUST be LOUDER!! For Paola, and for all others who have left this world the same way thinking there was no way out. We MUST FIGHT TOGETHER!!! For us, for THEM, and for all that are just meeting the same fate of Long Covid due to the continued mishandling of this god damn pandemic.

NO ONE deserves this fate, and their death must never be forgotten.

WE MUST KEEP FIGHTING!

I love you Paola, I always will. Thank you for your courage, your vulnerability, your willingness to always help us with everything and anything the community needed. Thank you for your innocence, your light and your darkness.

Rest in peace beautiful lady, I'll see you soon. 🖤🤘

**** If you or anyone you know is struggling with mental health and suicide, PLEASE reach out. Dial or text 988 ANY time day or night, there's dedicated people to listen and help. Also remember to reach out to loved ones if you have that option, and my inbox is always open for any one. ******