James

Existing with Long Covid since Jan 2021.

[James @Supercox0521]

@hannahspierMD I ran 10k and went for a spin the day before I ended up in hospital with covid. I never recovered. I just don’t get how overnight I went from super fit and active daily to 6 years of post covid symptoms. Like explain how that is possible from a psychological standpoint?

[James @Supercox0521]

@hannahspierMD When every objection is treated as proof of your theory, your theory has become unfalsifiable. That’s not scientific reasoning; it’s belief perseverance.

[James @Supercox0521]

@pumpjackguy @Martyupnorth I hate frauds who manage to get into these programs more than anyone as they make it harder for those who actually need the help, but based on my experience there really can’t be many 🤷🏽‍♂️ just insurance companies refusing to pay out like always

[James @Supercox0521]

@pumpjackguy @Martyupnorth If only ppl knew how hard it is to get disability benefits. I had Drs from Johns Hopkins, Mass Gen. and London Bridge who are specialist neurologists advocate for my disability and I was rejected by a gynocologist at the ins. co. and told to spend $$ I didn’t have to fight them

[James @Supercox0521]

@Martyupnorth @DarylM39995 I have positive PCR of covid before the vaccines existed and medical documentation of all the post covid issues I had before the vaccines were even accessible.

The virus was also made in a lab and released. At this stage I don’t want either in my body.

[Adam @ABrokenBattery]

Olympian Montell Douglas presenting BBC Lifeline for Action for ME

“For years, I’ve had chronic pain due to a medical condition and know how difficult it can be to live with. And those with ME also have to deal with social stigma and a lack of support.” #MECFS

[James @Supercox0521]

@dsethlewis I have a prescription, just nervous to try.. it seems it helps more than it harms? How are you doing on it now ? Thanks !🙏🏼

[James @Supercox0521]

@austinxwalker I’ve been in 1mg for a couple of years, it is helpful but wondering if I should boost it. Mestinon, nicotine patches and LDN have all been helpful for me as well

[James @Supercox0521]

@austinxwalker What ketotifen dose do you take out of interest? Thanks !

[James @Supercox0521]

@992tobias @TraceyABurgess I felt worse for first for 4 weeks, now it gives me a bit of a boost

[James @Supercox0521]

@curemetogether @renamemecfs What was your dosing? I’m about to start abilify

[James @Supercox0521]

@organichemusic @jossyoursalad69 Where can I find this study? Thanks !

[James @Supercox0521]

@JackHadfield14 Is it true that they didn’t see signs off neuron death or scarring, more that they were missing or not visible which could indicate potential reversibility ?

[Channel 4 News @Channel4News]

ME, or Myalgic encephalomyelitis, is linked to your genetics, an early study by Decode ME has suggested.

They’ve found eight areas of genetic code in people with ME are ‘significantly different’ to the DNA of people without the disease.

The results still need to be reviewed, but the University of Edinburgh research team hope these results will pave the way for future research and the development of drugs.

[Vipin M. Vashishtha @vipintukur]

A neuroimaging study of 44 #LongCOVID patients (15 bedridden) and 14 controls found significant volume loss and impaired white matter integrity in brainstem and cerebellar regions in LongCOVID patients, particularly the superior and middle cerebellar peduncles near the 4th ventricle. 1/

[James @Supercox0521]

@ElianaUku What doctors did you see that helped/ were willing to prescribe ?

[James @Supercox0521]

@debistarr @PutrinoLab I was told I couldn’t, i offered to be flexible and arrange to be in the city days in advanced of the required dates and I was told no. I live 1.5hrs away

[James @Supercox0521]

@LCBarbarism @Lizzie_efkp @dryostradamus No doubt. Still go thru the hoops, if it is just a covid thing, some people get approved for and improve on IVIG with paid by insurance cause it’s like evidence

Sadly not for me

[James @Supercox0521]

@LCBarbarism @Lizzie_efkp @dryostradamus A different hospital did this testing, apparently if those come back positive you need more screening for cancer (chat gpt)

Sounds like it’s just another long covid thing which is hardly comforting but are least it hopefully means you’re tackling the same beast and not a new one

[James @Supercox0521]

@LCBarbarism @Lizzie_efkp @dryostradamus Apparently it’s very common post viral/ post covid to have elevated numbers. And seemingly the logic for me was that I had a known trigger in covid it is highly unlikely it would then be cancer. They did do further parenoplatic auto antibody testing which was neg for.