Is it time for T cell targeting clinical trials in ME/CFS?

V.R.T. said:
Have we ever found an account of someone with MECFS who was given Campath for another reason?
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Yes—see here—seems to have been cured of ms and CFS.

OrganicChilli

Thread 'Autoimmune storm following alemtuzumab'

Authors

Chelsea Chan, Philippe Beauchemin, Ana-Luiza Sayao, Mollie Carruthers

Abstract

Alemtuzumab has been associated with the emergence of secondary autoimmune diseases. We report a case of a patient with relapsing–remitting multiple sclerosis who developed a refractory immune thrombocytopaenia associated with vasculitis, myelofibrosis and later Guillain-Barré syndrome following alemtuzumab. The medical community should be aware of unusual and unexpected adverse events that may be associated with alemtuzumab, especially when occurring simultaneously in the same patient...
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I’ve emailed the corresponding author for clarification but didn’t hear back. If I can find the email addresses for the first author I could email them. She also may have been cured from the cyclo….it’s a complicated case.
 
Jaybee00 said:
Yes—see here—seems to have been cured of ms and CFS.

OrganicChilli

Thread 'Autoimmune storm following alemtuzumab'

Authors

Chelsea Chan, Philippe Beauchemin, Ana-Luiza Sayao, Mollie Carruthers

Abstract

Alemtuzumab has been associated with the emergence of secondary autoimmune diseases. We report a case of a patient with relapsing–remitting multiple sclerosis who developed a refractory immune thrombocytopaenia associated with vasculitis, myelofibrosis and later Guillain-Barré syndrome following alemtuzumab. The medical community should be aware of unusual and unexpected adverse events that may be associated with alemtuzumab, especially when occurring simultaneously in the same patient...
  • Like

I’ve emailed the corresponding author for clarification but didn’t hear back. If I can find the email addresses for the first author I could email them. She also may have been cured from the cyclo….it’s a complicated case.
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Thanks I hadn't seen that. That's really intriguing. Although of course, the MS diagnosis does muddy the water somewhat as to what the cause of the patient's ME type symptoms was.

The side effects she suffered sound scary. It does highlight how serious Campath is. And the fact that, if it is studied in MECFS, it needs to be done by people who knows exactly what they're doing, and can look after patients if something goes wrong. And of course, it shows shows that trying it off label without the close monitoring of doctors is a very dangerous idea.

The account isn't very clear on how she was doing before as opposed to after the infusion - as in, did it significantly improve her condition? It says she had relapses after the infusion due to just how aggressive her case of MS was.

At one point they say:

'Second, the poor treatment response was unusual compared with previously described alemtuzumab-induced ITP. Treatment effect is expected to start within few days and complete remission occurs within 1 month on average.'

So from that they consider this a poor trearment response?

And yes a lot of drugs afterwards. So any if them could have caused the subsequent improvement. If she did have MECFS its not clear that she had the fairly rapid improvement of MECFS JE has speculated Campath might cause in MECFS if T cells are a driving force.

It's unclear to me if she had MECFS as we understand it or not, and what the effect of Campath was on those symptoms.

Her account of her stay hospital, and having to remind doctors constantly that she was a person is quite affecting.

It would be good to get more clarity from the first author if possible.

I wonder if there are any more relevant case studies out there.
 
With the announcement of a new funding guideline coming from the National Decade against Post-Infectious Diseases, covering “earlier phases of clinical trials”- it could be that we will get one for phase 1 and 2a.

But nothing is sure at this point.

I wanted to ask again which drug candidates would make sense apart from campath/ alemtuzumab?

Maybe we could find a german group/ groups who want to trial these- if we get one for phase 2a (the first funding guideline was phase 2b).
 
justlxsa said:
With the announcement of a new funding guideline coming from the National Decade against Post-Infectious Diseases, covering “earlier phases of clinical trials”- it could be that we will get one for phase 1 and 2a.

But nothing is sure at this point.

I wanted to ask again which drug candidates would make sense apart from campath/ alemtuzumab?

Maybe we could find a german group/ groups who want to trial these- if we get one for phase 2a (the first funding guideline was phase 2b).
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Orzeyful? But it hasn't been approved in the EU yet.
 
justlxsa said:
I wanted to ask again which drug candidates would make sense apart from campath/ alemtuzumab?
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If JAK STAT inhibitors show an effect in long covid (several trials in America/Canada due to report next year) then they would be an obvious one, but that might actually be a 'straight to phase 3' scenario, as two of those LC trials are phase 3 and many people with long covid essentially have ME/CFS.

Again if daratumumab and isatuximab are sucessful phase 3 trials of those - and trials iterating on them to figure out what is causing improvement - would be good, but those finish in 2028.

Apart from that I can't think of anything, but hopefully we'll have many more clues to work with in a couple of years, maybe sooner.

[Oh! There was a gamma delta t cell monoclonal that was discussed in the BTN thread at one point, I think you can find the discussion quoted in the first post of this thread. If we think they might be involved (there are big questions over whether thats what BTNs are pointing to) that might be an idea in terms of small trials, but I'm not sure.

Double Oh! I don't think that yDT cell monoclonal is approved for human use.]
 
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Chandelier said:
@Jonathan Edwards is there anything you would like to add to what has already been mentioned in the last two comments?
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Not immediately. I agree that there is a case for T cell targeting. But the case hinges largely on ethics. Ethics are about individual human behaviour. The ethics of a T cell study will depend entirely on which human being is doing it. That is hard to factor in to form filling. People like Fluge and Mella show that you can get these things right. Others get things wrong but that is not a reason to say nobody should go ahead. It is a reason to discuss openly and be very careful.
 
Jonathan Edwards said:
Not immediately. I agree that there is a case for T cell targeting. But the case hinges largely on ethics. Ethics are about individual human behaviour. The ethics of a T cell study will depend entirely on which human being is doing it. That is hard to factor in to form filling. People like Fluge and Mella show that you can get these things right. Others get things wrong but that is not a reason to say nobody should go ahead. It is a reason to discuss openly and be very careful.
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Is there anyone here in a position to look into whether there is anyone suitable to take this on in Germany? It would be good to find out if there is a safe pair of hands.

Perhaps Fluge and Mella might know?
 
Have we made any progress here? It seems like we may have leads for a buspirone trial in the UK, but nothing for Campath.

With the announcement of a new funding guideline coming from the National Decade against Post-Infectious Diseases, covering “earlier phases of clinical trials”—it could be that we will get one for phase 1 and 2a.
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@justlxsa Do you know when these funding opportunities will open?

Is there any point in cold-emailing researchers, for example those listed in here: ME/CFS Research Registry
 
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