ME and PEM recovery via Cyclophosphamide (personal story)

[Arfmeister]

Sorry to keep nagging about HLA, but do you have data available for that?

No data. The correlation with HLA might be coincidence.
At the moment I’m not making much of it.

PS If you want more info / detail on specific data, DM me

 

[Tia]

I’m just gonna put this out there. I don’t know what scientific value these data have.
But I myself, at least, consider this valuable data (in the ME-desert of patient drug trials + data).

A Survey overview of n=49 ME-patients anecdotes that went thru cyclophosphamide treatment (or similar drug) - most as part of a cancer treatment protocol (mostly breast cancer and lymphoma). All OUTSIDE of the Norwegian trials.
I made this with the help of few Patients. Most data collection was online - when possible through direct contact (with sometimes extensive detail).

You can see a minority of patients was able to cure ME thru a protocol with Cyclophosphamide
- 12% patients experienced >80% remission or complete remission/cure
- 33% patients: life altering improvements
- 24% patients: smaller, temporary improvements
- 8% patients : adverse events, worsening condition

View attachment 27752


Of course, there will always be bias in these kind of surveys:
- often cyclophosphamide is part of a bigger protocol : in some cases high dosage steroids like Dexamethasone might have helped - or other drugs from the protocol
- Nevertheless, it surprising and unexpected that a chemo treatment that it’s considered very hard on the body, could already cause symptoms improvement for some ME patients DURING the chemo (specially when it’s preceded by surgery / radiation)
- the responding ME patients included short term and long-term sick, mild to severe ME
- A sizable part of the responding patient (partially) relapsed after 2-3–4 years

*****
*PS in some cases, I could not get the chemo confirmed from the patient, but it’s seems very probable that a strong cytotoxic chemo like Cyclo was part of the protocol (e.g. late stage breast cancer chemo)

PS2: Also interesting to note is that many of these patients commented that their haematologist, oncology doctor or nurses predicted that they could get there ME CFS (and Fybro) symptoms better with chemotherapy (or maybe the steroids)
Like 8-9 doctor accounts, so apparently, this is a known fact within the oncology world

PS3: If interested, I can provide more detail as I wrote down all anecdotes as extensive as possible with the available information.

This is really interesting. I hadn't thought of looking at pts who had ME and then had treatment for cancer. How did you find pts for whom this was the case? Did you put a call out on social media?

Edited for typos

 

[Arfmeister]

How did you find it's for whom this was the case?
Did you out a call out on social media?

To do a poll on for example, X Twitter or other fora like this one is something I always wanted to do, but I’m too severe now.

Anyway, this was the method:
- searching the public internet including websites such as Reddit, X/Twitter and fora like phoenixrising.me, S4ME, for keywords such as:
- breast cancer, lymphoma, chemotherapy, HSCT, etc. + Cyclophosphamide, cytoxan, EC90, etc. inclucing brand / protocol names.

I included every ME/CFS patient (with PEM) that went thru chemotherapy.
Including personal reports from ME friends (from friends). Sometimes with very detailed reports.

All Collected data was put in an excel file including details:
- on severity, protocol, treatment duration, treatment effect, dose, time to response (if at all), effect description, side effects, duration of remission, or relapse, major symptoms/comorbidities etcetera of each person.
- Data was collected either by personally contacting the people who reported going through a chemo protocol with cyclophosphamide or when contact was not possible - reading through their profiles
(this is a thing to keep in mind; in some cases information was only available indirectly)

 

[ryanc97]

Having agonised over trial data with patent lawyers to squeeze the last drop of true wisdom out of them I ended up being able to say in court that what really matter are not in fact placebo controlled trials but dose response studies. If you really want to know if a drug works you accept nothing until you have seen the sigmoid curve (rarely it is another shape).

A trial of cyclo is feasible I think. You give four or five dose levels of cyclo, blind to dose, together with either a synergistic agent like a monoclonal, with no detectable side-effects, or a placebo infusion. You then look for a dose response relation that tracks to a definable biological endpoint, like IgG level maybe, rather than just tracking to cyclo side-effects. In other words you should get a sigmoid curve following cyclo dose that shifts significantly to the left for patients receiving the active combination. I have done trials as complicated as that in terms of analysis and it is doable.

The downside of trials like that is that a lot of subjects get sub therapeutic doses of what may be harmful drugs. You get over that by offering the full dose to all if the data are positive.

Wonder why they decided to try a new drug instead of going on with another cyclo trial..