Thread by @hummbugpie

I was a clinical sports therapist. My degrees in Sports Coaching and Exercise Science. The Royal Colleges insistent claims that exercise is effective for ME are based on a "deconditioning theory" - Not the actual science that proves #pwME are exertion intolerant.

If graded exercise rehab worked for people with #MECFS then why is the recovery rate only 5%? If I could successfully rehabilitate clients post surgery, after years of immobility, chemo damage and serious injury, then why did the principles of GET leave me severly disabled?

I specialised in reversing chronic injuries and musculoskeletal pathologies not just for elite athletes but for children too. GET took away all available hrs I had on my feet to still do my job. And they claim we are just accessing the wrong services ...

We do not need your ME specialist services. We made this clear when debunking the main treatments you offer. If you are unwilling to accept the harms you have been causing & insist on continuing them - then your services should be shut down and funding redistributed redistributed

To establish up to date, clinically guided practices based on proven methodologies such as Pacing and Heart Rate monitoring, physios 4 ME protocols, Long Physio protocols. Mayo Clinic and US Physician Coalition approved treatments such as myoafcsial release and

Trigger point therapy, the two techniques I specialise in. That have kept me breathing, partially mobilising and continue to keep me firing up paralysed muscles so I could access the diagnostics I needed to gain access to neurosurgery.

Actual diagnostics for structural comorbidities need to be a part of diagnostic protocols. The evidence supporting the presence of cervical compression disorders in #pwME and #Fibro is solid. But investigating these conditions are actively avoided in neurological examinations

I have severe ME. I also have cervical neural foraminal stenosis and spondylosis. I am curious to see how my ME is impacted post surgery. The recommended treatments for both was exercise .. and considering I'm being paralysed from the nerve roots I just can't understand how

Medicine is getting this so wrong. I read an article 2 yrs ago .. about cervical compression syndromes being buried into an oblivion 50 years ago when researching what was causing #Fibromyalgia - that no govt would accept funding corrective surgeries to tens of thousands of

Patients so cervical compression syndromes were actively left out of neurological assessments and exams. I lived this first hand trying trying advocate for myself due to previous neck injury and pathology of my symptom onset and disease progression, with my clinical understanding

I went to a Private ME specialist who reffered me for cervical angiogram to diagnose cerebral bloodflow issues and structural pathologies. Neurology said "there is no way this is vestibulary, I don't need to rule out organic illness" - diagnosed FND.

I tried to take action against this neurologist recently&because there was 5 years of neglect preceding this dismissal and misdiagnosis - I can't. I'm not sure how to proceed.. Whether to take on the official fight post surgery. I just don't know if I'll even make it to surgery

Currently unable to eat. Managed 1-2 meals every 10 days since Aug .. going through investigations for gastroenterology refferal. Struggled to gain and retain weight since 2018 despite HOW much I ate.. I've chewed through yrs of dislocating jaw and dental root infections.

My neurosurgery refferal is on hold until my specilaist recovers from his major surgery.. so yeah. Just hanging out in limbo, fighting for my life, watching this shit show erupt when we should be celebrating and powering forward. What will it take to dismantle the current NHS ME

Specialist Services? We could do so much more with that funding .... Take the services away, take the Royal Colleges power away. They willl move onto their next prey, as they already are by pushing GET and CBT onto all chronic pain conditions, whilst removing pain medication.

If I'm at the end of my life, I want to see Positive - Lasting - change emerging. Not Kings College London and the Wessley School of Psychiatry carrying on in whatever fashion they wish because they have access to corruption funding to keep producing their wicked&twisted research

Which is then used to influence govt policy. We see through you. However it isn't just a case of a few masterminds paying the system, its the system itself funding and accommodating the corruption. I hope the House of Lords debate continues now the guidelines have been updated

Because this #InstitutionalDiscrimination has to stop. We need to uproot the rot.