Anyone know about Berlin Cures BC007/cured Long Covid cases (applicable to ME/CFS)

roller

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for what i understand...
the med removes autoantibodies, then no need anymore for the much more intrusive methods like plasmapheresis.
unfortunately, those autoantibodies are known to come back.
but if it works, it could be very helpful for many diseases.

so weird...
antibodies (covid) disappear into thin air
autoantibodies come back, whatever it takes
 

Aidan Walsh

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for what i understand...
the med removes autoantibodies, then no need anymore for the much more intrusive methods like plasmapheresis.
unfortunately, those autoantibodies are known to come back.
but if it works, it could be very helpful for many diseases.

so weird...
antibodies (covid) disappear into thin air
autoantibodies come back, whatever it takes
It won't help in ME/CFS, Fibro, hypermobility, or so-called Lyme if it turns out that these illnesses are misdiagnosed porphyrias all along & Genetic diseases, not Syndrome labels...
 

kangaSue

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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
 

Aidan Walsh

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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
Experimental tests are all these are, a hypothesise. There is also no proof that COVID is causing the illness their tests are false. Numerous Teams in the USA looked at thousands of so-called COVID samples that were

said to be positive they all were negative they had influenza A & B...Other teams say it is thrombosis caused by bacteria likely from wearing masks. There are countless ME/CFS, Fibro, Lyme, hypermobility patients now found to have porphyria types all along...
 

Pyrrhus

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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
Related discussion:

Pathophysiology of skeletal muscle disturbances in ME/CFS (Wirth and Scheibenbogen, 2021)
https://forums.phoenixrising.me/thr...in-me-cfs-wirth-and-scheibenbogen-2021.83660/
 

Aidan Walsh

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Related discussion:

Pathophysiology of skeletal muscle disturbances in ME/CFS (Wirth and Scheibenbogen, 2021)
https://forums.phoenixrising.me/thr...in-me-cfs-wirth-and-scheibenbogen-2021.83660/
Skeletal Muscle disturbances are also involved in hypermobility so nothing new here. What is ME/CFS Fibro, Lyme antibodies, hypermobility? A load of wastebasket diagnoses is exactly what they are when a Doctor cannot find fault in patients & hear symptoms of Fatigue or Tachycardia or other symptoms they label these names in files. Fatigue, Tachycardia are also symptoms of porphyria types
 

Aidan Walsh

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There is disease. There are some AABs. There is a drug neutralizing them and there is improvement.

It looks interesting to me. :nerd:

I have disease. I have high Alpha1, Beta1-2 positive AABs. Hoping my Dr could offer me some drug to try (now or in the near future). Maybe I could improve or die but let's see:ill:
I hope they have something but most things do not work out but time will tell if they do or not
 

JES

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Skeletal Muscle disturbances are also involved in hypermobility so nothing new here. What is ME/CFS Fibro, Lyme antibodies, hypermobility? A load of wastebasket diagnoses is exactly what they are when a Doctor cannot find fault in patients & hear symptoms of Fatigue or Tachycardia or other symptoms they label these names in files. Fatigue, Tachycardia are also symptoms of porphyria types
It seems to me there is no established connection between porphyria and ME/CFS other than perhaps sharing vague symptoms like fatigue, which aren't ME/CFS specific. For example, a patient can be diagnosed with ME/CFS, then later gets diagnosed with cancer and they found out the cancer caused the fatigue. Clearly such a thing can happen, but then ME/CFS was a misdiagnosis. Same thing with genetic mitochondrial diseases. I have read about several cases in my country that were first diagnosed with ME/CFS, but that was only because the doctor didn't do the job of ruling out all other conditions. Before getting an ME/CFS diagnosis, you should have every other common cause ruled out.

Besides, having followed these forums for years and just finished a quick and lazy search, I didn't find a thread of anyone here reporting they have been diagnosed with porphyria. There are 1.2 million posts on PR from over 10 years, which is quite a decent archive and leads me to believe that at least most cases of ME/CFS have probably nothing to do with porphyria.
 

Aidan Walsh

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It seems to me there is no established connection between porphyria and ME/CFS other than perhaps sharing vague symptoms like fatigue, which aren't ME/CFS specific. For example, a patient can be diagnosed with ME/CFS, then later gets diagnosed with cancer and they found out the cancer caused the fatigue. Clearly such a thing can happen, but then ME/CFS was a misdiagnosis. Same thing with genetic mitochondrial diseases. I have read about several cases in my country that were first diagnosed with ME/CFS, but that was only because the doctor didn't do the job of ruling out all other conditions. Before getting an ME/CFS diagnosis, you should have every other common cause ruled out.

Besides, having followed these forums for years and just finished a quick and lazy search, I didn't find a thread of anyone here reporting they have been diagnosed with porphyria. There are 1.2 million posts on PR from over 10 years, which is quite a decent archive and leads me to believe that at least most cases of ME/CFS have probably nothing to do with porphyria.
If it is missed it will not be seen on here, there are people now on Facebook 'porphyria sucks' who were diagnosed with ME/CFS, Fibro, Lyme, hypermobility. An insulinoma pancreatic tumor could be another misdiagnosis in some patients...