Thread by @organichemusic

Linked are articles #1 & 2 in a series of many detailing individual treatment results from #TREATME survey. At a later date, a comprehensive overview & analysis of pertinent data will be shared.🧵

#1: NK, LK, SP
pharmd.substack.com/p/treat-me-sur…
#2: Immunoglobulin
pharmd.substack.com/p/treat-me-sur…

OVERALL CONDITION
Over 81% on SCIG (n = 11) & 72% on IVIG (n=29) reported their overall condition improved. Strikingly, >52% reported feeling moderately to much better w/ >27% of the 38 respondents feeling “much better.” This is significantly better than most other surveyed txs!

TIME TO IMPROVEMENT
Responses varied substantially. 9 out of 25 (36%) respondents reported it took just 1 to 2 rounds of therapy before starting to feel better, while on the other extreme, 8 out of 25 (32%) respondents reported that over 10 rounds of IgG were required.

DURATION OF BENEFIT
Respondents who improved were asked how long they have benefited from IgG. Over 80% reported benefits lasting at least 6 months, with over 50% enjoying benefits for over a year. Around half were still continuing therapy at time of completion of this survey.

TREATMENT DURATION IN THOSE WHO DID NOT BENEFIT

Did the 9 who reported no benefits receive sufficient rounds of treatment? Hard to know for sure, but three received just 1-2 IVIG treatments, while only two received over 10 treatments.

SYMPTOM REBOUND UPON DISCONTINUATION

13 of 13 reported that when they discontinued IgG therapy, at least a few of their symptoms returned. This is especially distressing considering how challenging it is to access and afford IgG treatments long-term.

EFFECTS ON SYMPTOMS
I asked those who reported benefits how many of their symptoms significantly improved with IgG. Impressively, 6 in 25 (24%) reported that “most/all” symptoms significantly improved‼️, while another 9 in 25 (36%) reported “quite a few.”

This is unique compared to most other surveyed treatments where the majority of respondents reported that only one or a few symptoms significantly improved. I will look into this more closely & comprehensively at a later date.

What about specific symptoms? Read on.

This chart shows the symptoms that received at least 20 ratings. Feeling of weakness improved in 80% (n=20) while “brain fog” (n=28), POTS (n=23), fatigue (n=34) & PEM (n=34) improved in 79%, 73%, 72% & 59%, respectively. Promising! All surveyed symptoms are reviewed in article.

Don't forget to check out article #1 linked above on nattokinase, LK & SP where I explore the most promising brands, differences between ME/CFS & Long COVID, rebound, and lots more.

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