Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

Article on GLP1s from New York Times


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"So much of the experimentation with GLP-1s is happening outside of traditional research models, careful clinical trials and even the health system. Given the immense popularity of these drugs, regulators and the medical establishment need urgently to figure out how to best capture and keep pace with the experiment. Otherwise it risks spinning out of control.

IN THE LAST YEAR, I’ve been talking to GLP-1 patients, as well as researchers and physicians, who are using or prescribing the drugs for an astounding range of diseases and conditions. Many report success: Debilitating long Covid symptoms dissolved. Decades of uncomfortable bouts of irritable bowel syndrome relieved. Patients said that the drugs loosened the grip of their addictions to drugs, cigarettes, alcohol and sex. Still others reported cognitive benefits like decreased anxiety and brain fog, and improved focus.


The tenor of these stories surprised me. Times Opinion asked the polling company Morning Consult to survey over 2,000 adults who have used GLP-1s. Before getting the results, I suspected that the reality of taking the drugs would be messier than the triumphalist headlines. The drugs can have unsavory side effects, most frequently nausea. Many people stop taking them because of those side effects and, perhaps even more so, cost and insurance barriers.

But the survey respondents were enthusiastic. Sixty-five percent of current or past GLP-1 users said they were “very interested” in continuing to take the drugs. More remarkably, 63 percent said that if their GLP-1 failed to help the condition it was initially prescribed to treat, they would either “definitely” or “probably” keep taking it for other benefits.

The more patients and physicians I’ve spoken to about this phenomenon, the clearer it has become: We are only at the beginning of the Ozempic era, but it is already shaping our culture and changing how disease is understood and treated. An estimated one in eight people in the United States alone have taken GLP-1s, placing the drugs among the most widely prescribed in the country right now. A significant number of those people are experimenting with off-label uses like Ms. Schmidt, or remaining on the drugs for unexpected benefits.

This experimentation is also driven by how the drugs seem to cut across the familiar borders of illness in ways that doctors haven’t seen before. “What we’ve come to realize,” said Dr. DiMarchi, who was a vice president at Eli Lilly and involved in GLP-1 research there, until he left the company in 2003, “is that many diseases may share the same root causes, even though we label them and treat them as distinct: This is an endocrine disease, this is a cardiovascular disease, this is a brain disease.”

This root-cause theory suggests that a wide range of conditions can be treatable with one drug class, sometimes through pathways in the brain and immune system. But, Dr. DiMarchi added, “What we know right now is small relative to what we don’t know.”"



Unfortunately my ME has not improved at all. There have been improvements in osteoarthritis but that is a result of weight loss. No other changes noticed and I have a new condition, not related to tirz as far as I know.
Webinar tomorrow should be interesting #77.
 
Now just started. It's easy to register quickly.
It was announced that this Webinar should be streamed within the next few days. I began to watch it and there was a reference to an article by Wallitt from the major NIH study, nothing to do with effort preference, but to do with the vagus nerve and low HRV.
I was interrupted but came back for some of the questions. Dr Scheibenbogen was suggesting different sub types of ME ( eg autoimmune, inflammatory were mentioned) might respond in different ways. She also said that Dr Kaufman was micro dosing the drugs, I think she said at 10'% of usual levels and getting good results.
I think the whole of the webinar needs listening to because firstly, how many of us know our subtypes? ( perhaps this is more advanced in Germany) and secondly, a 10% microdose of a low dose may have very different effects from a 15 mg weight loss dose.
I am taking a 15 mg dose for weight loss, but it's had no effect on ME; maybe I have even more fatigue.
 
I've heard of microdosing for LC.

Kaufmann and another doctor have a podcast and in this episode talk about GLP-1 drugs at low doses.
I don't believe in his biology and don't follow them but someone recommended me the channel around the time the episode came out, so I remembered seeing it there. I didn't watch it but I thought I might link it if someone wants to hear their reasoning or I guess the current popular narrative about low dose GLP-1s.
 
Dr Scheibenbogen was suggesting different sub types of ME ( eg autoimmune, inflammatory were mentioned) might respond in different ways. She also said that Dr Kaufman was micro dosing the drugs, I think she said at 10'% of usual levels and getting good results.
I think the whole of the webinar needs listening to because firstly, how many of us know our subtypes? ( perhaps this is more advanced in Germany) and secondly, a 10% microdose of a low dose may have very different effects from a 15 mg weight loss dose.
I am taking a 15 mg dose for weight loss, but it's had no effect on ME; maybe I have even more fatigue.
There are no defined subtypes. I’d take everything she says with a pinch of salt.

Kaufman has always used all the drugs and reported good results from just about everything. It’s part of his business model and his patients evangelize him bc he prescribes all the drugs. Again — shovel of salt.
 
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