#postviralfatiguesyndrome

[amethystkitchenwitch]

This all of this. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #pots #potsyndrome #potssyndrome #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles https://www.instagram.com/p/CptBT1wrkHo/?igshid=NGJjMDIxMWI=

[dragonskeepstore]

So mote it be. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #pots #potsyndrome #potssyndrome #mecfs #postviralfatiguesyndrome #dysautonomia #chronicillnesswarrior #spoonielife #chronicillnesschronicles https://www.instagram.com/p/CkgZFF0rQg8/?igshid=NGJjMDIxMWI=

[amethystkitchenwitch]

We are on our way to Chestnut Hill to meet with the leading expert in MCAS GI issues Dr. Hamilton. I made it. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #pots #potsyndrome #potssyndrome #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles https://www.instagram.com/p/Cpfdz6tL4YB/?igshid=NGJjMDIxMWI=

[amethystkitchenwitch]

February 28th was rare disease day. Please health care professionals understand when you hear hoof beats it is sometimes a zebra. Please stop telling especially women, bipoc, and lgbt it is anxiety or all in our head. I have a rare disease long covid, pots, me/cfs, mcas, gi dysmotility. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #pots #potsyndrome #potssyndrome #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles https://www.instagram.com/p/CpSX7ucLwLj/?igshid=NGJjMDIxMWI=

[amethystkitchenwitch]

I am so very grateful for my medical team. They listened and acted so I could stay out of ER and urgent for my birthday. I am so grateful for the providers and nurses at Southern NH Medical Center who made it so made it to my birthday. I am so thankful for the best specialist in Boston at Brigham and Women's Hospital. I am thankful to be able to eat a little for 1st time in 6 months. I am so thankful for my husband who has to put up with my dream food list. Hey honey, I for once know what I want to eat lol. I am so absolutely thankful and feel loved by my family who made sure I had the most amazing family. I am so thankful for my friends and family who made sure I went back to hospital. I am so thankful for my infusion nurses who take such amazing care of me. I am thankful that I am finally learning to listen to my body after all these years. I am thankful for the tools to deal with my ptsd. I am thankful for the love you have showed me. I am thankful to be alive. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #pots #potsyndrome #potssyndrome #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles https://www.instagram.com/p/CpSWFF8L3Af/?igshid=NGJjMDIxMWI=

[amethystkitchenwitch]

I have been through hell and back this past week and I need people to understand. When those with mental health illness, chronic illnesses or disabilities talk about, display, or just plain exist our existence, our life we are not being "negative". We are telling you our reality. Thinking positively or healing thoughts are not going to change what covid did to my body. Do I believe in the power of prayer, energy healing, even some positive thinking yep. I use these techniques and they do help. But when you tell someone who is disabled just to think positively or to think healing thoughts you are belittling their experiences and life. Nevermind blaming the person with the disabilities or illnesses. I don't often post here about how bad things can get because quite honestly I know people get tired of hearing it. I am fighting to adapt to my new life. I am not going to be "cured" at this point but I can try to treat everything holistically and intergratively, which I am doing. Remember you are only seeing a sliver of someone's life. I am working really hard towards acceptance and acceptance is not defeat. It is learning to live within my limitations. Please stop with the toxic positivity. We need to do better. Also don't freaking judge till you walk a block in someone's shoes. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #pots #potsyndrome #potssyndrome #mecfs #postviralfatiguesyndrome #dysautonomia #chronicillnesswarrior #spoonielife #chronicillnesschronicles https://www.instagram.com/p/CpPtwvDrgRd/?igshid=NGJjMDIxMWI=

[myalgicencephalomyelitiscfstom]

[More in-depth, insightful reporting by Ed Yong with quite a number of references to ME/CFS Tom] "Even Health-Care Workers With Long COVID Are Being Dismissed: Medical professionals are used to being believed, but as patients, they found that their expertise didn’t matter." By Ed Yong https://www.theatlantic.com/health/archive/2021/11/health-care-workers-long-covid-are-being-dismissed/620801/ Some extracts below: --- "At first, Oller didn’t know what to make of her symptoms. Neither did Darren Brown, also a physiotherapist, who tried to exercise his way out of long COVID, until a gentle bike ride left him bedbound for weeks. He and others told me that nothing in their training had prepared them for the total absence of energy they experienced. Fatigue feels flippant, while exhaustion seems euphemistic. “It felt like someone had pulled the plug on me so hard that there was no capacity to think,” Brown said. “Moving in bed was exhausting. All I was doing was surviving.” --- "Brown has spent years teaching people with HIV or cancer about pacing themselves, mostly by divvying up energetic tasks throughout the day. But the pacing he needed for his post-exertional malaise “was totally different,” he told me. It meant carefully understanding how little energy he had at any time, and trying to avoid exceeding that limit. Brown, Oller, and other physiotherapists with long COVID co-founded a group called Long Covid Physio to discuss what they’ve had to relearn, and they’re frustrated that others in medicine are still telling them, people whose careers were built around activity as a medical intervention, that long-haulers should just exercise." --- "Neither Brown nor Oller knew about post-exertional malaise or ME/CFS before they got long COVID. Oller added that she initially thought little must have been written about it, “but no, there’s a whole body of literature that had been ignored,” she said. And if she hadn’t known about that, “what else was I wrong about?” --- "Others feel more optimistic, having seen how long COVID has transformed their own practice. Once, they might have rolled their eyes at patients who researched their own condition; now they understand that desperation leads to motivation, and that patients with chronic illnesses can know more than they do. Once, they might have minimized or glossed over unusual symptoms; now they ask more questions and have become more comfortable admitting uncertainty."

[myalgicencephalomyelitiscfstom]

[myalgicencephalomyelitiscfstom]

https://twitter.com/GeorgeMonbiot/status/1355477134018555905?s=20

[myalgicencephalomyelitiscfstom]

https://twitter.com/jenbrea/status/1339748994751217665?s=20

[myalgicencephalomyelitiscfstom]

https://twitter.com/Huisarts_Vink/status/1313568533801041921?s=20

[myalgicencephalomyelitiscfstom]

PT = Physical Therapy

PEM = postexertional malaise

The 1st person has long Covid

https://twitter.com/rachels57708084/status/1331750973308432384?s=11

[myalgicencephalomyelitiscfstom]

I thought this was a very good article for anyone dealing with ongoing "post viral" symptoms following Covid-19 or any other infection. It contains lots of tips so lots of people who have been ill for years could get something out of it

[myalgicencephalomyelitiscfstom]

I thought I would post (or repost?) this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome. Fatigue (or synonyms of that) is far from the only symptom. Particularly relevant when similarities with the #LongCovid presentation in some people is being missed --- Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath." I'm highlighting this list as it has a large sample size and gives percentages. There are other lists out there. For example, one person recommended this list of symptoms for ME: https://www.hfme.org/themesymptomlist.htm

[myalgicencephalomyelitiscfstom]

Dan Wyke Dan Wyke:

President Biden's chief medical advisor Dr Anthony Fauci has also raised the alarm about the number of people developing ME/CFS or a similar long-term post-viral illness.

https://twitter.com/Dan_Wyke/status/1381859181825818628?s=20

[myalgicencephalomyelitiscfstom]

As a person with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I recommend those who have had Covid-19 and who have lingering symptoms such as an unusual response to exertion ["postexertional malaise" or "post-exertional symptom exacerbation"] (which can sometimes be delayed by 24-48 hours) to #StopRestPace.

Pace yourself. Don't push.

Also note after viruses, you can get worse as well as better. I was mildly affected for years after an infection (just about able for full-time education); now I need a wheelchair ☹️

Find out more about the Stop Rest Pace campaign here: https://www.meaction.net/stoprestpace/