Where’s Anonymous?

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September 7, 2020 | 13 Comments

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  1. I am probably one of many pssd sufferers sitting on the sidelines reading these blogs hoping for a cure. You so called “biohackers” will always be viewed as vultures until you come out with an actual cure. Stop attacking the one credible person that attempts to out you and persuade pssd sufferers to not get mixed up with you people and fall into an even deeper hole. come out with a cure and I’m sure that’ll shut us all up and prove you guys are what you say you are. Other than that, continue collecting money from vulnerable, disparate people and keep us out of it.

  2. Everyone should be concerned about the harms being caused obviously ,but splits amongst campaigners so often benefits those who are holding the control, and leaves ‘sufferers’ with few trustworthy places to go.in this case pharma, GPs, psychs – all the well known culprits will love to see energy being disapated by rows between those who could be looking for a way to collaborate – Its unsurprising that people are massively fed up but Rxisk shouldn’t be made the whipping post. To keep going against all the odds can be exhausting.
    David I think it’s useful to have given the information published above epecially including what actions have been taken and what will be posted soon. (I haven’t read all the back logs so some may have been published already)As much transparency as possible about what is happening behind the scenes .is encouraging and engenders trust . Some of us have no expertise some have a great deal through observing themselves and ;sharing’ the information – there is nowhere else it can be examined and taken seriously – And not just the physical symptoms – the attitudes and ignorance of ‘professionals’ is not documented to the extent Rxisk has done – There is some evidence that the work of Rxisk has influenced some at last even if it is not always acknowledged. It would have remained a hidden scandal for much longer without years of resilient work by Rxisk.Anonymity has meant a lot of information could be gathered via the blog but a name could have been given to David and the letter published anonymously – if there is going to be a run on negative e mails they may be meant to undermine but many people need and respect the work and find it a constant support. The opinions have been aired so surely that should be enough now.
    Regarding who contacts Rxis, and other forums – they tend to be young (what ever the cut off for ‘young’ is) so is there a reason for this? ‘Older’ people have grown up with computers so contacting forums wouldn’t put them off? Are youger people being given more prescriptions and suffering more adverse reactions?

  3. I have paid a high price for coming to Rxisk and saying it as it is!
    Why is someone taking out all their anger and frustration on RxISK even if they offer no solution. Why offer any solution if there is no solid science by what one can offer?
    There are so many charlatans out there profiting out of the sick and vulnerable and as far as I am concerned many in their field have offered NO HOPE for sufferers out there.
    If anything, rxisk has given me a voice to raise issues that no one is prepared to talk about because many have become sheeple and are too scared to rock the boat.
    Stone walling, is another method used by those who don’t want people like us to speak up!
    My opinion: The only solution that can be given to sufferers out there is to stay away from people who can’t offer any solid solutions.
    Stay away from medicines or other magic lotions/potions that compound to your health issues.
    Rxisk is not for anyone’s entertainment or enjoyment.
    It is a place where people can raise issues and be supported by many who have a journey that is not exactly for the faint hearted.
    If RxISK is unable to offer solutions, at least it is being HONEST about it!
    Many don’t see it this way because they want a ‘quick fix’ solution to health issues that we don’t have at the moment.
    My advice is genuine and sincere.
    STAY away from those who don’t care about your physical and mental well being.
    There are so many people out there that make so many false promises and then leave you in a lurch when the damage is done.
    Without Rxisk, many of us would not have a VOICE and in these uncertain times people who speak up are needed.
    We need more people involved with RxISK to keep the sharks at bay.

  4. Tis a quandary.

    Without clinical trials we are uncertain.

    With clinical trials we are uncertain.

    I’ve never really been one for ‘supplements’ that purport to do this or that. Years ago I tried the Cal/Mag thing to help with Paxil withdrawal. It didn’t do what it said on the tin.

    I’ve never really understood anonymous comments either. If anyone wishes to strengthen an argument why fly under the radar? I can understand why victims of PSSD would wish to remain anonymous, it’s not something that would be understood by a lot of a victim’s work colleagues and a PSSD victim going public could become the brunt of jokes.

    Looking into this bubble it appears, to me at least, that all was going swimmingly well until you highlighted the flaws. It appears you’ve criticised something that may have been lucrative for the vendor.

    Hence the backlash.

    I’m guessing the business model didn’t include, ‘what should we do if we are rumbled’.

  5. BMJ 2020; 370 doi: https://doi.org/10.1136/bmj.m3260 (Published 24 August 2020)
    Cite this as: BMJ 2020;370:m3260

    Raymond M Johnson, associate professor of medicine (infectious diseases)1, Peter Doshi, associate professor2, David Healy, professor3
    This week’s poll

    Covid-19: Should doctors recommend treatments and vaccines when full data are not publicly available?

    No 79.67% (1,489 votes)

    Yes 20.33% (380 votes)

  6. I appreciate RXISK and all that’s done behind the scenes. I only hope that at some point we find something to give relief to us out there just trying to live a normal life with all of this.

  7. Thanks for this post, Dr Healy. I found it helpful.

    Obviously, everyone with PSSD is looking for hope and reasons to be optimistic that the situation will be better.
    I think there have been some people who were excited about the possibility of research, or at least dialogue regarding it, and who have trusted Deya and believe him to have been genuine in his efforts (regardless of the perceived rights or wrongs of the methods). I suppose that some of these people have felt (again, rightly or wrongly) that a perceived avenue of hope has disappeared, and feel upset about this.

    I hope that those people who felt angry or upset about that (like the person who sent the email in this post) will read this post and get a more balanced perspective and greater understanding about what RXISK does and understand it’s position in regards to bio-hacking etc.

    We all need to stick together and work together to keep raising awareness and discuss potential solutions.

    Thanks Dr Healy for your continued efforts.

    • Deya was clearly attempting to provoke a reaction by quitting after David called him out. No one who believes in what they are doing gives up so easily. His magnificent meltdown speaks for itself.

  8. Ummm m only today saw that Ryan Ballows is now suggesting PSSD can be a result of taking Benzos.. That is not true… There is no Scientific evidence for this…. Could it be Ryan B is now targeting Benzo users as well as those on anti-depressants???

  9. I am not keen on the use of words like “cure” or “remedy” when discussing complex health issues. Being complex there is never a singular solution. The solution comes from identifying a myriad of contributing factors then dealing with each as best one can in some sort of coordinated manner.

    Solutions for such chronic health issues, in addition to being complex, do not work overnight. It is unrealistic to expect the “cure” to work, if there ever is one, or the remedies to work if a person has been in a deep hole that is getting deeper and such for what may be decades. It is like the journey of a thousand miles, the solution may take a lot of persistence and a heap of patience.

    Finally, I can understand the immense frustration sufferers feel especially when there appears to be no effective solution. My heart goes out to you.

    Keep strong!

  10. Q. Why are zombie movies so popular? Maybe because so many (too many) people identify with the walking dead. What ever the reason it’s clear that far too many folks are dragging around feeling half dead. There was a program on Netflix about crowd sourcing solutions with regards to medical problems called DIAGNOSIS, predicated on the possibility that SOMEONE somewhere might have an answer/solution to a medical mystery or condition. All input was welcome though not all input was deemed helpful but It was the spirit of collaborating to help an individual in need of a medical miracle that tapped into global knowlege . I thought it was a brilliant model/method of global problem solving—one that could/should be used much more to solve difficult or perplexing medical conditions.

  11. RE The series DIAGNOSIS – crowdsourcing solutions for medical mysteries/problems.
    Contact information is:
    Dr Lisa Sanders RE Diagnosis

    203.867.8117.
    203.789.4044.
    203.789.3007.
    Email. lisa.sanders@yale.edu.
    Lisa Sanders, MD, FACP < Yale School of Medicine
    Dr. Lisa Sanders crowdsources diagnoses for mysterious and rare medical conditions in this documentary series based on her New York Times Magazine column.

    Perhaps you can get PSSD on the show for next season, or else do your own version of the show.

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