Donations for a trial using BC 007 specifically for me/cfs

[keepontruckin]

They are trying to get donations to trial the drug bc 007 sooner rather than having to wait for the results of the trial for long covid to take place.
https://twitter.com/search?q=#bc007&lang=en

 

[Martin aka paused||M.E.]

They are trying to get donations to trial the drug bc 007 sooner rather than having to wait for the results of the trial for long covid to take place.
https://twitter.com/search?q=#bc007&lang=en

We also do that bc we also think that a trial for ME/CFS might not come for BC007

 

[Marylib]

I'm totally confused who is advocating for what because the Covid vaccine injured people are looking for it too. It makes sense because something went way wrong with that vaccine for some people.

 

[godlovesatrier]

Wouldn't destroying autoantibodies render vaccine protection/immunity inert in those who need the protection?

While it sounds like a good idea for LC. I'm struggling to see how it would work for ME?

 

[Marylib]

Wouldn't destroying autoantibodies render vaccine protection/immunity inert in those who need the protection?

While it sounds like a good idea for LC. I'm struggling to see how it would work for ME?

Glad I'm not the only one trying to understand the whole thing...

 

[Shanti1]

I think it only targets certain antibodies, namely the GPCR autoantibodies, specifically the beta-1 adrenergic and the alpha-1 adrenergic receptor. Here is a quote on this from another thread:

https://forums.phoenixrising.me/thr...ases-applicable-to-me-cfs.84695/#post-2352589

Wirth and Sheibenorgen hypothesise in their new paper that beta 2-adrenergic receptor dysfunction is of critical importance in the pathophysiology of ME/CFS, in causing vascular dysregulation.

While BC 007 has been found to have effect in Long Covid via eliminating functional pathogenic autoantibodies directed against the beta-1 adrenoceptor, Berlin Cures has also assessed it for neutralising GPCR autoantibodies against all of alpha-1 adrenergic receptor (α(1)-AR AAB), beta-1 adrenergic receptor (ß(1)-AR AAB), beta-2 adrenergic receptor (ß(2)-AR AAB) and endothelin-A-receptor (ETA AAB) and found BC 007 to be effective for all of these.
https://www.prnewswire.co.uk/news-r...of-bc-007-for-the-treatment-of-691428881.html
https://clinicaltrials.gov/ct2/show/NCT02955420

It has been supported by others researching dementia that BC 007 can neutralise GPCR autoantibodies against beta 1 and 2 adrenergic receptors in that condition.
https://pubmed.ncbi.nlm.nih.gov/29538413/

Wirth and Sheibenorgen hypothesise in their new paper (Pathophysiology of skeletal muscle disturbances in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) that beta 2-adrenergic receptor dysfunction is of critical importance in the pathophysiology of ME/CFS, in causing vascular dysregulation, so BC 007 may have some potential for ME/CFS also.
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-021-02833-2

My question is, it seems that only a subset of ME/CFS patients are positive for these autoantibodies (https://pubmed.ncbi.nlm.nih.gov/26399744/), does this mean this medication would only be helpful for those individuals?

 

[bensmith]

@shanti , i’d think so yes. And even some
Of the positives would likely fail treatment too, i’d guss.

 

[Pyrrhus]

Main discussion about BC-007:

Successful drug against Autoantibodies helps with long COVID
https://forums.phoenixrising.me/thr...t-autoantibodies-helps-with-long-covid.84653/

 

[Martin aka paused||M.E.]

Hi,

Donations can now be made for the BC007 drug study for ME/CFS at the Erlangen University Hospital.
We need 800.000 €.
Let’s get this done!

http://we-demand-research.org/

 

[Alvin2]

What is BC007?

 

[Diwi9]

What is BC007?

Information is on the link here: https://wir-fordern-forschung.org/en/was-ist-bc007/

 

[Pyrrhus]

Here is the English-language page for donating:
https://wir-fordern-forschung.org/en/

Donate Now
We need EUR 800,000 to include ME/CFS patients in a promising drug research project.

WE NEED 800 000 €
for a medical study at the University Hospital Erlangen with the drug BC007 of the company "Berlin Cures" for ME/CFS patients

 

[Pyrrhus]

What is BC007?

Here is the main discussion thread about BC-007, for more information:

Successful drug against Autoantibodies helps with long COVID
https://forums.phoenixrising.me/thr...t-autoantibodies-helps-with-long-covid.84653/

 

[Alvin2]

Frankly 800K for a drug trial is not warranted at this point.
They can start with feasibility studies which cost very little and a phase one trial would not cost much either from an established scientist.

 

[hmnr asg]

How could they possibly raise 800k euros? that is a gigantic number! and we are all sick and broke
Can we just order it online and try it ourselves? like a crowdsourced clinical trial?

 

[BrightCandle]

How could they possibly raise 800k euros? that is a gigantic number! and we are all sick and broke
Can we just order it online and try it ourselves? like a crowdsourced clinical trial?

Pass it as a phase 3 for covid long hauling so its got its safety certificate and then the moment you start selling it privately you'll have your ME/CFS trial to work out if that 800k to complete the trial process is worthwhile, there will be zero need to raise that from patients there will be ample evidence of future prospect for the drug.

 

[kewia]

Also a petition from openpetition:

https://www.openpetition.eu/petitio...g-against-long-covid-and-me-cfs#petition-main

to provide EU funding for further testing of BC007 for Long Covid and ME/CFS.

 

[Living Dead]

Wouldn't destroying autoantibodies render vaccine protection/immunity inert in those who need the protection?

BC007 takes out certains specific autoantibodies (the immune system attacking receptors in the body).

The whole point of BC007 is to take out these antibodies without affecting other antibodies.

That means, if Rituximab didn't work, BC007 can't possibly work. But if it does, it doesn't wipe out the rest of the immune system, like Rituximab does.

There is little point in raising 800 000 USD for this trial, as the major hurdle is selecting patients, not removing the antibodies, which can simply be done with Rituximab or even cheap steroids. Why don't we use steroids for ME already? Because of those with ME due to a different cause, such as infections or NO overproduction. These would worsen.

Verification and increasing availability of the antibody tests, should be done before testing this treatment. What is the point of making this treatment approved, if no one can get it, because tests to select patients are not available?

 

[Alvin2]

That means, if Rituximab didn't work, BC007 can't possibly work. But if it does, it doesn't wipe out the rest of the immune system, like Rituximab does.

Interesting, can someone with more immune system expertise second this?

 

[Noir]

They've reached 146 000 Euros now! You can follow the project here:

Twitter:
https://twitter.com/MECfsFundraiser

Info page in English with (donation progress bar at bottom):
https://wir-fordern-forschung.org/en/