ME/CFS Treatment Approaches Overview

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it-hyperfocus

Established Member
Hi,
I'm currently try to build a report generator to create a fast treatment approaches overview. It's based on public available sources from the internet, consolidated with AI. I ran it for ME/CFS, here's the free report: https://healthresearch.pro/wp-conte...cephalomyelitis-Chronic-Fatigue-Syndrome.html

Let me know if you have any questions or suggestions on how to make it more useful for you.

(The translation-problems are known and under construction)
(Due to legal uncertainties, the report is currently geoblocked to us-only)

Kind regards
it-hyperfocus
 
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You should now be able to access it. I added an exception for the link, hoping that nobody in Germany views this as a violation of the HWG (German Therapeutic Products Advertising Act).

I'm sorry for the confusion, I'm just still unsure about the legal status. It's not that easy in germany to publish things linke dosage and other things in a patient-oriented format...
 
The website design is certainly interesting. I’m glad it appropriately shows GET as contraindicated.

But shouldn’t there be a top note saying something like; “No successful phase III trials or treatments with widespread approval exist”. Instead of having to dive into a frankly, faithful, representation, of how the field is full of contradictory low quality evidence ahha.

in the sense I’m worried the website sort of implies you’ll find something useful if you dig through this. Which best you’ll find is something that had been only tested with low quality methods so it looks superficially promising.
 
It’s difficult to capture problematic research when pulling from public sources.

In this example below for CBT there is a narative, however the issue is that the PACE trial is widely discredited (BBC, 2018 a short article https://www.bbc.co.uk/news/health-43490335 ) but was not withdrawn (the full history to date by Dave Tuller 10 years on https://virology.ws/2025/10/25/trial-by-error-some-thoughts-on-ten-years-of-trial-by-error/)

Reducing the issues down to something like CBT was found to have improved Chalder fatigue scores (itself a controversial and problematic tool) and blah but in 2021 NICE stated it shouldn’t be curative just supportive” doesn’t really cut it, for me.

If I were a new-diagnosed person, if I were outside of the UK and had no idea they had a government department called National Institute for health and Care Excellence and whether their opinion is worthwhile or not, or I didn’t know that GET and associated CBT for “pacing up” was such a risk I wouldn’t understand the dangers here.

The sort of people who give CBT to patients with ME/CFS won’t say it’s curative. So how will you know if you’re getting the right type? It’s not a treatment for ME. It’s something available to anyone having struggles with changes in their life, same as paracetamol Isnt a treatment or cure for ME but might help with pain.
 
Also see it recommends yoga, walking and stretching, strengthening exercises and qi gong.

Which would be fine if exercise wasn’t contra-indicated in ME/CFS by NICE.
Also who is the audience is it only Mild ME given that Moderate, Severe and Very Severe have limited to no time and ability to sit up or stand
 
Jonathan Edwards said:
I tried to access the HealthResearch.pro site to get some background but it says I am blocked.
Until further notice I will treat this as serious SPAM and advise others members to do so.
Click to expand...
The website author said it was only accessible in the US due to legal constraints around medical recommendations, and exceptionally made the ME/CFS page accessible outside the US so we could review it.
 
Yann04 said:
The website author said it was only accessible in the US due to legal constraints around medical recommendations, and exceptionally made the ME/CFS page accessible outside the US so we could review it.
Click to expand...

Nobody has any business to be saying that sort of thing and blcoking people if they are genuinely trying to provide a service. It is a clear indication that the author has not thought through the ethical implications of the site. I remain of the view that this is serious SPAM.
 
The original idea was to provide an overview of currently discussed approaches (not solutions). It was also to not elevate RCTs above other classes of evidence, since that would exclude a lot of what comes out of TCM, for example. Btw: an RCT assumes that a substance works across the entire test group, which, depending on how uniform the triggers or the bodily functions being regulated actually are, may never be the case.

I don't dictate to the reader which classes of evidence they should prefer. You can, however, use the searchbox for 'phase', for instance - then you'll only get results that actually say something about (study) phases.

The dedicated studies module is still in development. It will display completed and ongoing studies worldwide. To help navigating, I added guideline recommendations.

take a look into the HWG §10: it's not allowed to list prescribed medications in advertisements. I list demo reports on my website (like the full ME/CFS). That means, an advertisement lists prescribed medications. That's only one of a lot of problems which I have to handle. All of them require a expensive lawyer per country (!) or reduce the product (e.g. dosage - which cut dosage variation which is interesting in some cases). That's why I block the site for any country which I still doen't have evaluated. I do not want to do this, but I also do not want to clearify this in curt against me.

The main idea was to save time, not cost time. Why it should cost money is not clear for me. It warns in a lot of entries against the entry itself or it tell you about missing evidence. If you follow the disclaimer, you will not buy anything just based on the listing in the report.

There is a entry-based guideline search. Each entry is checked against a flood of guidelines. I will check why it list some diets which are declined by NICE as ok.
 
The disclaimers do not alleviate the ethical responsibility to not do harm to other people.

Take the Rituximab page as an example. It claims that there is conflicting evidence with regards to efficacy when the phase 3 had a crystal clear null result. This result clearly overrides the positive differences found in smaller and methodically weaker trials. There is no conflict between these results, everything fits with Ritux being ineffective and bias towards the intervention being prevalent in poorly controlled trials.

The only sensible thing to write about Ritux is that a phase 3 trial has proven that it’s ineffective, it’s dangerous, expensive and should not be used to treat ME/CFS.

By not taking a clear stance, the page makes it appear like there is ambiguity when none exists. This will lead to some people thinking it might be worth a shot.

The best case is people will waste time and money. The worst case is that lives are ruined.
 
it-hyperfocus said:
The original idea was to provide an overview of currently discussed approaches (not solutions). It was also to not elevate RCTs above other classes of evidence, since that would exclude a lot of what comes out of TCM, for example.
Click to expand...
Why would you not treat a proper RCT as more robust evidence than non-controlled observations?
it-hyperfocus said:
Btw: an RCT assumes that a substance works across the entire test group, which, depending on how uniform the triggers or the bodily functions being regulated actually are, may never be the case.
Click to expand...
That’s false, it depends on which assumptions you make beforehand when doing the power calculations. And if this was prohibitive for detecting meaningful benefits in a subset, we would have no positive trials of any intervention because there are virtually no interventions that work for everyone in a group. When you also factor in the lax thresholds for clinical significance, it’s a non-issue. Actually, false positives are a far bigger issue than false negatives.
 
The Rituximab entry lists also the following:
- ...and the positive phase-II results could not be reproduced by other groups
- Rituximab is regarded as a highly toxic medication; it is not approved for the treatment of ME/CFS, and sources note that no drug has MHRA or FDA approval for ME.
- Sources therefore classify the drug as experimental...

It's not about harming other people when the entry is more than clear about not using this for ME/CFS. It should have some type of phase-III-failed-badge to see entries like this before reading the details. I will implement this. The disclaimer talk about 'maybe poor data quality', 'no sources filtering' and 'why not to adapt dosage or substances into the own stack'. I don't know how to publish information with more caution against harming other people.

I would treat a proper RCT over a lower evidence as long as there are RCT-based options available and as long I'm fine with the main- and side-effects. I would also take a look into the parts with lower/other evidence to check what they're talking about. Maybe another country have an approved option which fits better for my needs? Or other medical systems, TCM for example. They understand a lot of how the body works. They lack on trials for a lot of knowledge. Would you not take a look into these stuff just because some parts doesn't have an RCT? I would want to know about these approaches. That's why I created the report builder... Just for not checking hundrets of sources in 20 languages by hand or translator.
 
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