Oxfordshire ME Group for Action

Self-help group for people with ME/CFS based in Oxfordshire

[Oxfordshire ME Group for Action @OmegaOxon]

Full programme now out! Join us on 13th November at 5pm for an OMEGA hosted mini conference featuring talks from Prof Karl Morten and colleagues. https://t.co/JoHdinoyl8
#ME #CFS #Lyme

[Oxfordshire ME Group for Action @OmegaOxon]

A couple of hours to go - time for a rest first?

[Oxfordshire ME Group for Action @OmegaOxon]

Full programme now out! Join us on 13th November at 5pm for an OMEGA hosted mini conference featuring talks from Prof Karl Morten and colleagues. https://t.co/JoHdinoyl8
#ME #CFS #Lyme

[MortenGroupOxford @OxMEDiscovery]

https://t.co/HBssaHg1Ib

[Oxfordshire ME Group for Action @OmegaOxon]

@Matt_Pinner Resilient

[Oxfordshire ME Group for Action @OmegaOxon]

Lots of excellent replies to this question on sensory overload

[ThePOTSPostman @ThePOTSPostman]

Sensory overload is still one of those symptoms I haven’t figured out how to describe well.

If you experience this, how would you go about describing it to others?

[Oxfordshire ME Group for Action @OmegaOxon]

34 years ago we all knew this was rubbish, but we were powerless to stop the effects from snowballing.
The misattributions should be taught in medical school and learned from, to encourage curiosity.
That it still isn't makes me furious and heartbroken in equal measures

[Adam @ABrokenBattery]

#MECFSAwarenessMonth – Day 5

1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades.

[davidtuller @davidtuller1]

Many thanks to all who supported (financially and/or morally) Berkeley's recent crowdfunding campaign for my project. It ended yesterday at 101% of the goal!! https://t.co/A75shgst6P

[Oxfordshire ME Group for Action @OmegaOxon]

Looking forward to getting together this Sunday

[Naomi Whittingham @NaomiWhitt]

As we approach #MEAwarenessWeek, a piece recognising the courage that exists in our community.

It acknowledges those who have lost their lives, those who have not improved, and those who’ve experienced progress.
https://t.co/Dppqw71YJV
(1/7)

[Steve B @75ThunderRoad]

15/

We could put clean air in every classroom of every school.

We could encourage ill children and staff to stay off school until they recover.

We could be much more understanding of mental illness.

We could put health above presenteeism.

[Steve B @75ThunderRoad]

10/

It's illness which is disrupting children's ability to attend school and educators' ability to attend work.

It's illness which, above all else, is causing turmoil.

It's illness which is stopping people from thriving in and out of school.

[Neurologist Mom @NeurologistMom]

Letter from one neurologist to another,

My dear colleague Suzanne O'Sullivan, I wish I’ve never felt the urge writing this open letter to you. I’ve been in your shoes for decades as a practitioner in the same field, but you’ve never been in mine as a mom whose child has been severely ill with COVID-related countless autoimmune conditions, aka “Long COVID,” and I would not wish it on my worst enemy.

You say, “There should be nothing offensive in my view at all here because my position always with these disorders is that people are suffering, symptoms are real, but it’s how people conceptualise what’s causing those symptoms that I think is a problem, and it’s also the perceptions.”

They are not getting offended. They cannot, because they are too sick to get offended by anything. There are children and teens like my daughter. Some are not even five. You think the conceptualising of their symptoms might be the issue for them while they are living in agony?

Do you know how many times we, as physician parents, saved our daughter’s life from the brink of death because of her body’s reactions to very basic drugs in the ER, like Reglan and Benadryl, which caused life-threatening reactions?

Do you know the studies about disrupted blood-brain barriers in these patients, causing many toxins and very “safe” medications, ones that are not supposed to enter the brain, to spread and cause neuroinflammation?

Do you know there is a group created by NIH called RECOVER-TLC, which includes scientists worldwide, working to understand the mechanism behind COVID-related conditions, aka “Long COVID,” and how to treat those patients?

There is too much to say, but I don’t have time because my daughter, whose life depends on me, needs my care. I was a practicing neurologist once. I am a full-time caregiver now. I hope you never have to switch sides.

But please know that every effort to psychologise this extremely serious condition may cost lives. I have a voice to protect my daughter, but most have not, and what you are doing might cost their life.

[Tom Kindlon @TomKindlon]

Life shrinks with ME/CFS.
Found on the CFS community on Reddit

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

[#ThereForME @ThereForME_UK]

It’s @JoPlattLeigh, MP for Leigh & Atherton! Jo is a @UKLabour champion in parliament for #pwME & #pwLC + new chair of the APPG on ME.

Her message: “My Christmas wish is for people with ME and Long COVID to be recognised and supported through healthcare and the workplace.”

[Whitney Dafoe @DafoeWhitney]

Post Covid Garbage Heap

The virus seems to have moved through me but I’m sinking like a heap of garbage in the middle of the ocean.  Lots of neurological symptoms.  And I’m either sleeping all the time or wired with my heart racing, air hunger and unable to think at all.  Laying here wishing I could work or sitting up wishing I could work, trying to will myself into clarity somehow, trying and trying and trying.  And then sleeping again.  All day and night.

I was in a semi-good place before Covid.  I found some things that helped with brain fog (I’ve written about them in a forthcoming post I feel too foggy to publish) and I was able to work on things almost everyday.

Sometimes it feels like every time you find a bit of solid ground it moves out from under you.  Every time you get a grip on the rock wall it shifts.  Every time you catch your balance, the earth rotates.

I’m tired and angry and frustrated and sad and lonely and I just want Covid out of my body and to go back to my previous baseline.  When I was of course also wishing I could go back to my previous baseline 🫠

[GuyRope @GuyRope]

Great stand up clip. From the husband of someone with ME/CFS
https://t.co/K0qZQI79zq

[Alisontomyradioooo @arisonsned]

Very sad to hear about the passing of Byron Hyde. There are few who genuinely did so much for #myalgicencephalomyelitis
RIP and thank you for everything 💙

[Matthew Dalby @MatthewJDalby]

@Daltmann10 "Analysis of the findings revealed a bias towards the views of one school of thought and a lack of papers on the immunological or virological aspects of CFS."

This isn't a new thing at the BMJ.