Glacier and me: Amid a stunning landscape, an ailing science journalist weighs his own uncertain life span

An article by Brian Vastag, @B_V

https://www.washingtonpost.com/heal...ed9004-bac0-11e9-bad6-609f75bfd97f_story.html

 

Beautifully written, but poignant article.

Brian's words remind me that living with a disease that significantly reduces one's quality of life shortens a life in more than just years.

That ME may always dominate throughout the majority of my life, and that of millions of others trapped in this decades long horror, is an immeasurable tragedy.

 

@B_V

Thank you very much for your beautiful article.

It is so sad you have this debilitating, and also frustratingly unclear diagnosis.

Please forgive my presumption; it is my understanding from your writing you have waited several years with the wrong diagnosis.

This strongly emphasizes the urgency for the medical community to develop a much improved understanding of Myalgic Encephalomyelitis, in order that others will not be tossed into what health care views as a catch-all bin.

Thank you for your words.

Take care.

 

@B_V I am sorry you are again in the wretched amorphous place where diagnosis is unclear.

If I recall correctly, it took some doing but @b-V was eventually included in the first round of the NIH clinical study. He also took part in round 2 of the study. In order to do so the adjudicators had to have determined that he had ME.
And now he's back to an unclear diagnosis.
All of this raises questions about the clinical study, participants, diagnosis of ME, characterization of PEM in ME and other conditions, and so much more .....
(To be clear, I am not asking @B_V for answers on these things although thoughts (his, and those of others) would be appreciated.)

 

Thanks for posting it.

I am still diagnosed with ME/CFS. I went through phase 1 of the NIH study, had all of my records sent to the 5 outside experts, and they unanimously agreed that I meet all of the criteria for ME/CFS. A year later, I had a muscle biopsy, and that's when the muscle disorder was diagnosed. Nobody caught it earlier because the EMGs I had were reported as normal up until 2018. And no neurologist is going to order a muscle biopsy (surgery) if the EMGs look normal. But, because medicine is medicine, there are some % of myositis patients who are EMG-negative. Might be 10-30 percent. So I fall into that category.

Docs, especially NIH researchers, like to find one diagnosis that explains everything wrong with a patient. But they have been unable to do so for me. So, yes, I am still an ME/CFS patient. I certainly have symptoms and problems that are associated with ME/CFS but not with any type of myositis (brain fog, etc.)

At the NIH conference in April, Dr. Walitt told the crowd that he & Nath and the team have had to exclude three patients from the study so far even though they went through phase 1 at least. One patient was diagnosed with a rare cancer, one with Parkinson's or Parkinsonism, and me, with 'atypical myositis.' So they won't be using my data in the study, as far as I understand.

BV

 

And that’s why they are struggling to recruit participants/complete the study.
I guess most of us have at least one other diagnosis.....

 

@B_V Thank you very much for clarifying.
Comorbidities and ME. An all too familiar "tune." (Kind of like an earworm.)
I am glad you've been able to find healthcare professionals who are willing to look at more than ME. I hope you continue to get answers.