I guess it had to happen eventually. All this inactivity with long periods of just being sat down and I've got myself a pretty excruciating dose of lower back pain. Doing paracetamol, voltarol gel, trying to move about my flat a little more and doing some mild stretches. If it doesn't get better I'll have to go to the doctor but anyone got any tips? #LongCovid #MECFS #pwME

This month it’s the 26th anniversary of me getting M.E. I was a healthy & hyperactive 13 year old, but everything was turned upside down by a “simple” virus. Unfortunately, this Post Viral Condition still effects every aspect of my life.

#MECFS #pwME #MillionsMissing #PostViralCondition #NEISvoid

When #pwme and #LongCovid recover it is a joy & something we can all learn from.

Do not allow #MEcfs extremists to pretend that recovery from #MyalgicEncephalomyelitis is an assault.

Do not allow yourself to be bound with bias and locked up into hatred.

https://www.livpost.co.uk/p/professor-paul-garner-was-delighted?utm_medium=ios

And that, my ghostly friends, is that!!

𝙒𝙚 𝙖𝙧𝙚 𝙙𝙤𝙣𝙚.

I was an #MEcfs patient. I've helped thousands of #pwme. I came up with the best argument against PACE & #PACEgate. I created a new treatment.

I'm not going to be bullied! 😄

I'm going to run the London Marathon!!

There is work to be done:

🪁 Charities have to secure welfare.

🪁 Advocates have to find & speak out for #pwme.

🪁 Researchers have to eradicate bias & anti-science.

🪁 Journalists have to find & record the facts.

🪁 And patients have to build a compassionate community.

There are many ways to build an #MEcfs community.

At a fundamental level it comes down to the sort of relationships that exist between members of the group.

If you create master/slave relationships then your overall community will be a toxic pile of broken glass & rubble.#pwme

---

As things stand; the wider world hears what #MEcfs say about rest, respect and research, but then it sees how #pwme actually treat #pwme:

Abuse.

While charities press for governmental support, advocates raise awareness, journalists report facts & researchers investigate the disease:

#MEcfs patients need to learn how to support each other.

I remember taking the time to read an entire document detailing one #pwme's experience with illness and mistreatment.

That same #MEcfs patient wrote-off my own 35 years of illness, my years of service as an patient advocate and scientist in just two words.

It's unbalanced.

In the future, activism, research & journalism must be kept separate.

I've said it many times before, but data gathering is key. It's something every #MEcfs patient can do to contribute to the treatment of #pwme.

Your shitty day should be recorded & made available on a global anonymised database in the hope that patterns & treatments will emerge.

People with M.E will also need to build a new community.

As well as new medical treatments #MEcfs patients will need new social support, awareness raising, reporting, and science.

#Pwme will need new:

💡 Charities
💡 Advocates
💡 Journalists
💡 Researchers

And these new groups & individuals must be able to accept reports of harm.

We have seen in #MEcfs that research & activism efforts present a clear conflict of interest.

Selective funding and even the promotion of community abuse of rival researchers biases the science for all #pwme.

My decision is both fair and highly protective. I have set the bar for communication incredibly low:

#Pwme, journalists and researchers simply have to be able to process reports of bullying.

That this excludes so many merely underlines the extent of the abuse problem in #MEcfs.

I have rejected and will reject all personal and professional dialogue and criticism arising from anyone in #MEcfs who 𝙧𝙚𝙛𝙪𝙨𝙚𝙨 𝙩𝙤 𝙥𝙧𝙤𝙘𝙚𝙨𝙨 𝙧𝙚𝙥𝙤𝙧𝙩𝙨 𝙤𝙛 𝙗𝙪𝙡𝙡𝙮𝙞𝙣𝙜, 𝙖𝙗𝙪𝙨𝙚, 𝙖𝙣𝙙 𝙝𝙖𝙧𝙢.

#pwme #MyalgicEncephalomyelitis #MillionsMissing #LongCovid

Once you're out of the trees you start to see more bracken and grass, and the views start to open up.

(I wouldn't be able to do this walk in my current state of health, so it's great to be able to relive it vicariously through my past self!)

#MECFS #pwME
#LakeDistrict #Cumbria #UK #Landscape #Rosthwaite #valley #tree #LandscapePhotography

Saw a new doctor this week. They are starting me on melatonin and 2 antihistamines to see if they make any difference to my symptoms. As well as this they have referred me to a specialist who has a particular focus on long covid and patients with multiple and complex issues. As always I will approach it all very tentatively and not get my hopes up, but just being believed and taken seriously made me feel a sense of relief. #mecfs #pwME #longcovid

The #MEcfs patient and allied research communities will not reject intimation and threats.

This is the primary reason so many #pwme remain so ill.

@Katenockles

I am sorry to hear that your daughter has #MEcfs. I think it's important to maintain hope. I wasted a whole lot of time being defeatist about my illness.

I'm so glad to know you found some comfort in my words. I have, however, determined that is not safe for me personally to speak here on #mastodon.

Rather than dance around the issue I think it best to devote all the remaining energy that I have for #pwme to my #MEcfsRecovery movie. I hope you find something useful within it.

@gretebrug Thanks for writing, Grete.

I would like you to understand that I am very happy to leave Mastodon.

I leave well before the abuse orchestrated by #MEcfs charities and/or researchers takes a hold again.

It is simply not safe for me to speak here on #mastodon

Don't be too sad. I'm sure you'll come across my movie when I finally get around to publishing it.

And if you miss interaction, you and any #pwme can always, always, work to make discussion of M.E safe.

I worked hard to popularise the hashtag "#pwme" over on the #birdsite

I needed an alternative to #MEcfs

So each day I put out 5-10 new ideas about M.E, explained that #pwme stood for "People with ME" (or depending on context "a person with M.E") & I finished up with a joke.

#Pwme was set up as a channel in response to bullying of patients, not from Medicine, but from charities.

LIke #MEAwarenessHour its original purpose is *currently* lost.

But that's not necessarily where the story ends!

I'm either having a big crash after seeing family for a few hours on Christmas day, or I've got the lurgy. Perhaps I should have been more careful, they've all been mixing and attending events 'as normal' for ages now. Though none of them were unwell on the day or are unwell now. I did take 2 taxis and wore a mask, perhaps it didn't work. Either way, however I got this, I am not looking forward to seeing how my already compromised body copes with it 😩. #longcovid #MECFS #pwME

My cognitive dysfunction ("brain fog") & other M.E symptoms have unfortunately worsened since I had Covid in 2020. This has made writing a bit of a tricky challenge.

Chronic Illness is never predictable. But I hope that this fog starts to somehow shift and that words begin to flow more easily.

#AmWriting #WritingWithChronicIllness #MECFS #pwME #RandomThoughts #NewYearsWish

Remembering my cousin, who died young.

https://henryandersonbooks.com/2022/12/21/remembering-ian-rudd/

#pwME