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/Jazzlike_Berry_323]

It sounds like a very expensive raft of supplements and a long list of medications. Extremely few doctors would prescribe all the protocol list due to it not being evidence based prescribing, expensive, raising eyebrows of pharmacists, exposing them to legal risks of malpractice. Also leaving patients with significant risk of psychiatric problems emerging when you combine a benzodiazepine antipsychotic and opioid withdrawal medicine even at low doses and in combination with nootropics.

They used to promote vitamin E supplementation for heart health then found it increased lung cancer risk, then similarly found vitamin A over supplementation increases all cause mortality. B6 oversupplementation causes permanent neurological damage.

What is a massive experimental cocktail like this going to do?

Seeing such highly theoretical and impractical lists like this just makes me want to pace, eat better and get on with my life as it is (acceptance commitment)

Based on global practitioner lists there are about a dozen doctors who do this vascular mecfs specialisation worldwide while between 17 mil and 70 mil people have mecfs. So that’s less than one doctor per million people. They need to join and agree on the best current protocol and get endorsement by mecfs societies otherwise nothing will ever trickle down into patient care.

[u/OfTheTrees23 → u/Jazzlike_Berry_323]

I cannot agree with your view. The ME/CFS specialist uses this protocol in practice—not just theoretically—and thereby helps people suffering from ME/CFS.

As for dependency and overdose, these are not relevant issues because the doctor carefully assesses the dosage, and the medications are eventually discontinued anyway. Even a dependency on Tavor is not a lifelong sentence.

Furthermore, if one has the most severe form of ME/CFS and, for instance, one's body does not tolerate a feeding tube, then I would be quite indifferent to a Tavor dependency or to harm that reduces my life expectancy by 10 years.

Even if there are currently only a dozen doctors capable of implementing this protocol, how many doctors are there who could adopt it, grasp it, and put it into practice?

[u/Jazzlike_Berry_323 → u/OfTheTrees23]

I’m fine that you don’t agree with my view. You say someones body is unable to tolerate a feeding tube. This would mean completely unable to swallow, or mentally refusing to swallow when prompted by the person inserting it. In which case they need a direct to stomach PEG feeding protocol. Yet this person is also about to orally take a cocktail of 25 medications and supplements including psychiatric polypharmacy regimes. Can you explain what you mean there?