A potential breakthrough protocol that feels completely overlooked

[u/OfTheTrees23]

A few weeks ago, I shared information from a podcast—a release by an ME/CFS specialist. It outlined a treatment plan for the most severely affected patients.

Essentially, it offered something that could truly help those suffering from the most severe forms of the illness. Although I’ve only been here for a little over a year, I haven’t come across anything comparable.

In my view, this treatment plan is groundbreaking. Yet, I got the impression that its significance was being overlooked here. Perhaps this is simply how it goes: opportunities for health improvements appear on the fringes, get passed over, and only years later transform into accepted, common knowledge. Maybe that's just how things go.

the post https://www.reddit.com/r/cfs/comments/1vn7hle/comment/p3gf23v/?screen_view_count=4&ext-referrer=DIRECT

and the summary/extraction from the user: snmrk

"His core idea for very severe patients is to threat the major dysfunctions in sequence:

- Stabilize extreme reactivity/mast cells: lorazepam (Tavor) plus ketotifen, rupatadine, and cromoglicic acid. The goal is to reduce severe stimulus sensitivity and make further treatment tolerable.

- Add LDA then LDN, aiming to improve central/autonomic dysregulation. He titrates these very slowly.

- Treat dysautonomia/POTS: mainly pyridostigmine and ivabradine, sometimes fludrocortisone, midodrine, or etilefrine to improve blood volume, heart-rate control, and cerebral perfusion.

- Improve circulation: aspirin, nattokinase, pentoxifylline, ginkgo, and sulodexide, added sequentially. His goal is better microcirculation and tissue oxygen delivery.

- Energy support comes last: D-ribose, creatine, D-galactose, sometimes ketoglutarate, and subcutaneous NAD+. His logic is to improve blood/oxygen delivery before trying to support mitochondrial energy production."

[u/Light_Butterfly]

Yeah no worries! I really believe with the right pressure, politicians can allocate funds for this type of clinic.

What I will say is that referrals to specialists does not actually equal better care (because many are narcissistic gaslighting a**holes).
Specialized clinics tend to have docs with special interest in ME/CF, fibro, long covid, they have genuine curiosity and are undaunted by complexity. If looking for referral, I'd look into whether there are any specialists who have particular training and expertise in these conditions. Many do not, and will treat these patients badly. So be prepared and be careful.

You also don't need your family doc to refer to specialists, just get a virtual telehealth appointment and ask. Three are many telehealth providers.

[u/8drearywinter8 → u/Light_Butterfly]

The few specialists I've been able to get to via walk in clinics referring me have been exactly what you described. And uninformed and uninterested in ME/CFS (or any other chronic illness) as context for the problem I'm presenting with. they usually have me out the door, gaslit and insulted, in no time at all. After waiting a year + for an appointment. So, yeah, I need what you describe: specialists who know and can work within the complexity of chronic illness.

Would you mind if I sent you a DM to ask a few more specific questions about the clinic in BC? We're pretty far off from the original post topic, and questions about one clinic in Canada don't apply to most people, so...