Direct Action!! The Chronic Collaboration speak up, and they need us! 

Donated!! Steve pretty much quoted what I say to my partner who has supposed mental health conditions. He should be placed under neurology, not psychiatry. As a pwME, I fully support The Chronic Collaborations' ethos. There is, most certainly, a lack of visible action.

Brilliant! Thanks to you all. The passion and commitment to fruitful action born out of rage for how it is for us is what’s been missing and is sorely needed .

So many of us with undiagnosed conditions as Steve mentions as people with ME, it’s as if it’s the separation of these charities and clinics is done on purpose. My gp is just not interested in helping me. In fact over the last 25 years since diagnosis it’s been all work on my part only confused by the NHS input I’ve received. A whole box of confusing and conflicting paperwork my healthcare has been such a mess. Still cannot get Somatoform removed from notes even with a previous MyalgicE diagnosis following EBV and new symptoms like EDS POTS MCAS. Thank you for continuing to highlight the many disaparities for those of us who’d love to be part of society again in an active way 💙❤️💙✨✨✨

Incredible episode. I loved hearing the rebellious, antiestablishment and passionate attitudes of Nicola and Steve. I’m behind all of their work and it’s refreshing to see a different way of doing things. Thanks Dan, Nicola and Steve!

Thank you all for your fantastic work in raising awareness with this episode! I know from personal experience how little energy we all have to do anything so thank you so much for speaking up for those of us who are unable to!

Great mention of Act Up. My uncle visited last year. He has HIV (he's good now & meds made it not transmissible) and had Hep C that took years to clear. When we chatted about ME, i said, we don't have people going in the street like they were during the Act Up movement. He might not have treatment if all these people hadn't been there.

Well done guys. Great episode.

Fantastic episode! Great input from all. I have always been a fighter and anarchist but it's difficult to keep that up when the system is constantly knocking me down and I don't the physical energy to keep getting back up. I love the way Steve and Nicola approach the multitude of obstacles and it does inspire and empower me to do whatever my energy envelope allows. I've never asked my family for any sort of help or advocacy but I've realised that they would probably be organising fundraising events or running marathons etc if I had a high profile illness. So maybe I need to ask some of them to amplify my voice. I think if there was a healthy advocate/campaigner for every person with these chronic illnesses we would be very hard to ignore. ✊️

Thank you. I have never heard of Atlantoaxial instability (AAI) and Craniocervical instability (CCI) before. One of my main symptoms is this puffy heavy head, numbness down the back of my neck, dizziness etc. I just watched a video about it by Ross Hauser MD. That explains A LOT! Brain pressure (which can be measured), white matter lesions (which can be seen on an MRI). Pressure on the vagus nerve. Inability to flush out toxins from the system. That is all very interesting! I think the information is out there, it is just a Herculean task to gather it and make sense of it.

joining the dots, is much needed as is pro activity. The Chronic Collaboration you are doing an amazing job and it looks like an exciting future ahead. Thank you for your action and coordinating the chronic community

Very interesting and yes enlightening, Daniel about the whole PTSD construct… I will be calling it PTSN now with an ‘N’ for neurology. I’ve too been caught up in this genuine questioning of mental health due to being told by NHS the same which leaves you feeling very confused about what is going on and that is not our fault, despite years of therapy! It’s like a subtle abuse …. I too get those palpitations which I’ve been told is anxiety. I get them at different times they come on suddenly too. How can they be anxiety when I’m completely relaxed and happy when they come on. And CBT/ NLP can F off too. Had my fair share of that to very little positive outcome and often been detrimental. Psych needs investigation and we def need new laws and legislation. So true Nicola, these tests need to be in place. I will support this.

I remember when Steve wrote about Nicola in the Canary, thinking how we really needed illnesses to be researched together and how so many comorbidities are never diagnosed. Still unsure about my own as things aren't looked at. Why I booked an appointment with Dr Taylor for later this year. V trying to get clarity at least in some things.

So true Nicola, they seem only concerned with their own interests. I was so angry that I had to terminate my appt with action for Me because I was being asked to pay a considerable amount for a Gp who was STILL LEWRNING about M.E. I was FURIOUS! Had a reply from Sonya Chowdray but then it all faded after my response to the higher up person I emailed. I’m appalled that nothing has changed and feels it’s gone backwards. NEVER again will I donate to them

Thank you ❤️

Love that you're wearing a zebra hair band 💙🦓💙

@Daniel, I'm sad you decided to censor Steve. I believe he said something like: "If you're giving money to the mainstream UK ME charities, your money could be better placed elsewhere because we will actually do something visible with it" and he is absolutely totally right. Why would I as a person with ME patient fund a charity who at best will use it to do the government/NHS's job of medical and social care and support and research funding, and at worst use it to fund Bacme of all people!! That's just using my money to keep the status quo the same when really the government and nhs need to be held to account. Instead I have chosen to fund a group that will actually LISTEN to us and then be our voice as loudly and visibly as they can: The Chronic Collaboration.

For us By us. This is CRUCIAL. I am done with being represented by able bodied people as they just don't get it. And I'm also pretty fed up with the sonya chowdury show.