Open ReMEdi clinical trial, UK [Lindus Health, Alfred E. Tiefenbacher GmbH]

Sallycatherineharris said:
I’ve found out that the drug they are trialling is amifampridine used for LEMS
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I had to look up LEMS:
Lambert-Eaton myasthenic syndrome (LEMS) is a rare condition that affects the signals sent from the nerves to the muscles.

It means the muscles are unable to tighten (contract) properly, resulting in muscle weakness and a range of other symptoms.

More than half of LEMS cases occur in middle-aged or older people with lung cancer. The remaining cases are not associated with cancer and can start at any age.

LEMS is also known as myasthenic syndrome or Eaton-Lambert syndrome.
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https://www.nhs.uk/conditions/lambe...rome (LEMS,syndrome or Eaton-Lambert syndrome.
 
Hi all,

First time posting here. I hope you are all well. I have recently signed up for the reMEdi trial and I was quite looking forward to it - but the posts here have made me a bit nervous. I found this forum when I did a Google search of 'pheo-01' to see what it was. Do you think this is something I should go ahead with?
 
SineadÓMaolagáin said:
Hi all,

First time posting here. I hope you are all well. I have recently signed up for the reMEdi trial and I was quite looking forward to it - but the posts here have made me a bit nervous. I found this forum when I did a Google search of 'pheo-01' to see what it was. Do you think this is something I should go ahead with?
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Welcome, @SineadÓMaolagáin ! I hope you enjoy your stay here - you’re more than welcome to stick around as well :)

I believe that these quotes by Jonathan sums things up quite nicely. The issue here is that the participants don’t get enough info about the intervention to actually be ‘informed’ enough to give an ‘informed consent’ to participate. Based on that alone, I’m personally not confident in recommending that people consider the trial.

When you don’t have enough information about the treatment, you don’t know what you’re signing up for. I’m sure somebody else would be able to give you a list of questions you could send to the researchers - I’m not quite up for that myself at the moment.

Jonathan Edwards said:
There is a legal requirement to obtain informed consent and that requires adequate information. How you read that may be less clear but participants should be pushing for meaningful information which would of course include the nature of the drug and the evidence base for trialling it.
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Jonathan Edwards said:
It would be up to the trialists to ensure safety. Giving patients that sort of information would not be valid 'informing' because they could not be expected to be able to interpret it.
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That they’re developing a remote platform and using tools like the Ouura ring and GripAble device are interesting. Being able to have remote studies and gather information will I think be important to running more studies more efficiently and involve people who are housebound.

But the solid framework of information and backup support still needs to be there for patients and some of the talk of things like motivation and rehabilitation on the gripable site also raise little warning flags for me https://gripable.co/
 
Hi has anyone successfully managed to sign onto this study? no matter what i put in i get rejected with different answers and also inemailed them asking and they said the catchment area is no longer Oxford and surrounding areas which may be why, however their prescreening question still requires you to be near oxford so are they rejecting everyone because of an error with their prescreening question not being updated?
 
glacialalpaca said:
thank you so much Yann!

Has anyone successfully managed to sign up to the study? Literally every possible severity option made me ineligible for the study which is surely an error with the screener?
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If that is the case, they probably need to hear about it. It might be that they have made some recent changes to the screener, so it might not be relevant if people were able to sign up earlier.
 
glacialalpaca said:
Hi has anyone successfully managed to sign onto this study? no matter what i put in i get rejected with different answers and also inemailed them asking and they said the catchment area is no longer Oxford and surrounding areas which may be why, however their prescreening question still requires you to be near oxford so are they rejecting everyone because of an error with their prescreening question not being updated?
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Maybe they have filled their quota needed to participate.
 
This might not be the same thing as it doesn’t say ReMedi and the about page is titled ‘Living Better with ME’ which could be just a page title or I guess a trial called ‘living better’?

Scrap that I think it is the same as the email is remedi @

Just seen an ad for this on social media:

https://www.lindushealth.com/research/living-better-with-me-cfs

The methodology is interesting for certain good points including it seems the monitoring will be done in patients homes. And include a gripable device an Oura ring to wear and smart apps - I assume the ring measures something but not sure what

and whilst I’d always like to see much longer term follow up the method (2weeks on med, 2weeks+1week off meds increased further if you get PEM during that time, then repeat with other ‘med’ - one being the placebo)

Haven’t delved as far as finding out what the medication is tho
 
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