Thread by @hummbugpie

Cematics for vagus nerve stimulatin&Nitrous Oxide production- myofascial release, dry needling & trigger point therapy #STO clinical sports therapy for pain and improved gut motility/ paralysis. Reiki, meditation.. has kept me going with esophageal+widespread paralysis since 2015

https://twitter.com/ArtburkNikki/status/1548366867026153476

To be fair I have been putting in 2 hour to 18 hours of manual neuromuscular activation on soft tissue release ever since but my hands are generating so I have trained A multidisciplinary Team in what I do improve my gut motility / innervated small intestine within a month 🙏🏽🤍🕊

Esophageal paralysis still a huge problem-overall paralysis I still have to manage daily until my multiple neurosurgeries-if I even qualify having Endstage nerve damage due to IgG paraproteinemia/an immunoglobulin pathology highlighted as a biomarker for #EBV induced #ME in April

Dr Wier has referred me for plasmapheresis on my return home from Help Apheresis, here in Larnaca Cyprus. HelpA has been highly effective for me&I have only had 2rounds so far with only 2more to go. I cannot afford to self fund for further rounds 😪 gofundme.com/f/help-Trish-a…

We are trying to clear the underlining neurodegenerative pathologies that have caused my widespread structural degeneration throughout my body due to post viral illness. I will be sharing my story through the press as soon as I am able. @MEActNetUK have giving me the contacts

For reliable journalist such as Sean O'Neill who may be able to share my story for me with the sensitivity and urgency that is required not only for me or #pwME but to prevent people with #LCME from going through the same too. However I am too sick2 approach th journalists myself

As I once was when I was well enough to fulfil my advocacy Roles & undergo training with @MEActNetUK - I am one of the Nazis the SMC director Fiona Fox is referring to 🥺😭💔 but we worked in silence we had to in order to bring about the change that is now unfolding

My family are utterly traumatised by what it is taking to Save My Life - we do not have the same strength as you do, my parents already last one child due to human error. I cannot forgive myself for how distressed we all are, asking them to hold hope.

I have been instructed to prioritise rest and avoid all stressed by the researchers here who are saving my life the same researchers the science media centre are trying to discredit it absolutely infuriates me and I cannot wait to counteract it

We already have a draught press release ready we are just waiting for the researchers to approve and add or remove anything that they wish to. We are also waiting to see the full effects of the 4 rounds of trx I am receiving due to the charity of the #HelpApheresisFoundation

We all need to prioritise our healing now and try and get our strength up in order to see this through - I will be by abandoning social media as I go to my last week of trx - to destress - to hope for the best response possible - as instructed by these incredible doctors

I have a long way to go before anywhere close to well enough to share my journey and how I have even managed to keep myself going this far but if you require anything from me, if you wish to try and apply the same hands on techniques that have helped me, I will help you. Msg me🙏🏽

I will be sharing what it takes to keep my nerves firing so I can partially mobilised & move food through my own body. Southmead Hospital is still discriminating against my urgent refferal (feb 1st) triage for feeding tube and all critical & emergency care needs this year

If we can clear the underlining and neurodegenerative pathologies - and especially with the recent findings of the haemangiomas / tumors in my spine and I hope to qualify for urgent neurosurgery on my return. I have no idea how long my spine last - so I intend to dedicate

Any improved function - the highlight what happens to post viral patients when we are continually neglected stigmatised and abandoned by Healthcare. @CQCpressoffice me and my family need your support the Help Apheresis global trial needs your support @actionforme @MrTopple

I have a list of reliable journalists we have a draught copy written and awaiting approval from the researchers who the UK media are trying to discredit - but I need to rest and get through my 2nd & last week of free treatments - my crowdfunder has been exhausted

If you can help donate or circulate my crowdfunder story I would truly appreciate this it means I would be able to receive further rounds of help apheresis. I am awaiting direction from my neurosurgeon @harleystclinic who is currently on leave so has not reviewed recent findings

I must rest now but I promise I'll fight for all of you if it's the last thing I do, I will dedicate my life to this. @WesselyS has destroyed enough of our lives - The level of institutional discrimination & corruption will be highlighted through my story gofundme.com/f/help-Trish-a…

I appreciate I am a sitting duck and a major target because I have already highlighted this corruption through Twitter and the indie sage scientists @BinitaKane et al circulated my posts.. but I choose love over fear every time. My heart is with you all please do not doubt this

I have been and still am - fighting for my life.

Please circulate my crowdfunder if you can as I only have 1 wk to raise funds to receive further trx otherwise I will be flying home after my catheterisation removal surgery @doctorasadkhan @BinitaKane @actionforme @CQCpressoffice

Thank you all, I have to respect the therapy and withdraw from social media now as my doctors request. You can email me at [e-mail] or message me directly I will be checking in once a day I just will not be able to respond unless it requires urgent action. Thank you x

@threadreaderapp unroll pls 🙏🏽🤍🕊✨