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More abnormal test results; more tests required: I don't know how much longer I can keep living this way

Yet another afternoon camped out at UW Medicine on Roosevelt here in Seattle.

I'm now too ill to lift my head.

The first round of test results are abnormal and show I'll need still more tests.

I'm physically annihilated and it feels like someone is poking holes in my soul.

Meanwhile, I'm reading all the Myalgic Encephalomyelitis research and my physicians are siting there, slack-jawed.

Day 6 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ChronicIllness #DegenerativeIllness #EnoughAlready #physicianneglect #physicianerror

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British writer Maeve Boothby O'Neill died of Myalgic Encephalomyelitis and it has led to an inquest:

I'm particularly ill tonight so I'll keep it short.

Everyone w/ M.E. and all our allies should be following this story. The Times of London covered it, too, but their feature is behind a paywall, so here's a free version in Devon Live.

Physician abuse and/or neglect of persons w/ M.E. kills.


"During the pre-inquest, Maeve's family called upon assistant coroner Deborah Archer to hold an Article 2 inquest to consider whether systemic or policy-based failures could have caused her death. Article 2 of the European Convention on Human Rights protects people’s 'right to life'.

Mr O’Neill told the coroner that Dr Hemsley was describing 'a failure to protect not just Maeve’s life but the lives of those, like Maeve, with severe ME'.

He said: "This was not a case of a local hospital being unable to treat a patient with a particular and unusual illness. This is a nationwide failure to help ME sufferers. This is the very definition of a major systemic failing.

“In my view, this is an admission that there was a breach of the duty to protect someone who was in the care of the state … That breach, in the form of an admitted inability by the NHS to provide care, led directly to Maeve’s death."


Death prompts Devon hospital chief to speak out on 'ignored' illness

Day 3 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #Disability #pwme #physicianerror #MedicalTrauma #Britain


Death prompts Devon hospital chief to speak out on 'ignored' illness

We highlight the case of 27-year-old Maeve Boothby-O’Neill on International Day of Persons with Disabilities (December 3)
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After 32+ years with Myalgic Encephalomyelitis, I still haven't been referred to an M.E. specialist. Here's just one reason why:

Here's part of a text I sent to my mom and brother yesterday.

I'm not bound by HIPAA and it's not defamatory if it's true so, as the saying goes, let's tell the truth and shame the devil, or in this case, my Harvard grad PCP who knew nothing of M.E until I became his patient in the spring and started sending him research:

"Update on my end:

At 4pm my UW [University of Washington Medicine] PCP doc sent me a message on MyChart:

He had only just now sent an email to the M.E. specialist at Mayo Clinic.

He received an auto-reply saying she's out of the office until 'early 2024'.

So, I've been his patient since early April and he still hasn't obtained a referral to an M.E. specialist for me.

At one of our first appointments, he said he'd obtain said referral for me, then he lied and said UW had docs abreast of M.E. research, then he said a month and a half ago that he'd reach out to an M.E. specialist at Mayo Clinic.

Now I find out he has had no contact with her at all so far.

Took [my Pomeranian] Jordan for the longest walk I could sustain.

They're watching my ongoing disintegration and are, for the most part, worthless."

Day 2 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #physicianerror #ChronicIllness #pwme #Disability

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