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Patient-Led Research Collaborative & PAWS/PSSD Relationship to Long-COVID


PeaceInside

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Hi Everyone!

 

I was recently interviewed by a cultural anthropologist at Georgetown University (Emily Mendenhall) (who is writing a book on functional neurological disorder being the modern day version of hysteria-in relation to women's health) on my experience of PAWS/PSSD and how I feel it is related to Long-COVID and many other seemingly "neuro-immunological" conditions. This was both to raise awareness about our community and begin a more cross-disciplinary conversation amongst researchers and scholars looking into these health issues.

 

Emily pointed me to the Patient-Led Research Collaborative (https://patientresearchcovid19.com/) who has been doing patient-led research on Long-COVID and related conditions. They are well funded and well connected to both the larger medical community and federal bodies. I am hoping to speak with one of the women who runs the institute (Lisa McCorkell), at the behest of Emily, to discuss the latest research in PAWS/PSSD and its relationship to Long-COVID, as well as highlight the other areas of research, advocates, and scientists who are working in this particular community and the potential for collaboration and advocacy for our issues.

 

Most interestingly, I took their COVID-19 Patient Experience Survey-this survey could easily be translated to our community without changing almost any questions or language, just interchanging the word "COVID" for "PAWS and/or PSSD", which was truly interesting and something I am hoping to discuss with Lisa; there was almost no differentiation between symptoms and experience in this Long-COVID survey than there is for PAWS and PSSD. Importantly, this institute accepts patient-led theories on Long-COVID AND its related conditions. Emily suggested that I write a paper on PAWS, PSSD, and its relationship to all of these conditions in order to raise more awareness for true reality of psychiatric medication withdrawal for many and why the medical community, regulatory bodies, society at large, etc needs to take it seriously. Wanted to update everyone on this and say that there are people out there who really do care about making this experience better and are actively working on it even if we can't see them or know them. There is hope!! I will keep everyone updated on how this progresses and whether or not we can get some sort of larger, mass, scientific survey out there for us to participate in, in the USA on PAWS/PSSD (as I have seen begun in other countries).

 

Much Love to All :D

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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A lot of the symptoms are indeed the same (...as noted in my signature). I'd like to see a whole lot more research funding for both conditions. The organizations doing the most for Long COVID, like Patient-Led and IMO the best, POLYBIO, are funded by donations ... Need more government funding for biomedical research.

Olanzapine (5mg) started June 2023 - This is the only drug I'm currently taking, haven't used any other psych drugs.

After 4 weeks dropped to 2.5mg for 5 days then dropped to 1.25mg for 3 days, withdrawals commenced. I then took a single dose of 3.75mg. Then went to 2.5mg. since July 19

Hoping to hold at 2.5mg  and GODWILLING I will STABILIZE.

I can't tell WD symptoms from Long Covid symptoms. I think a bit of both, and I think my quick earlier taper has made the LC symptoms worse ... what to do.

Update: Sept 28 2023: -2.5%   Oct 5: -2.5%   Oct 12: -2.5%   Oct 19: -5%   Oct 29: -5%   Nov 10: -5%  2.0mg  Nov 20:  -5%  1.9mg  Nov 30:  -5%  1.8mg  Dec 12:  1.75mg   Dec 22: 1.70mg

Dec 29: 1.65mg Jan 06/24: 1.60mg  Jan 14: 1.55mg Jan 25: 1.50mg   Feb 12: Updose to 1.55mg

(percentage drops are from previous dose)

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  • 3 weeks later...

I have ME/Chronic Fatigue Syndrome and I think there are similarities between it and PAWS. In fact, I thought SSRIs were protecting me from ME flare-ups but eventually realised reducing my SSRI was triggering PAWS, which I mistook for ME. ME is very closely related to long covid, and many people with long covid are being diagnosed with ME.

 

I've been completing this survey https://www.meaction.net/epi/ "The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease) is a survey-based study to probe more deeply into ME/CFS, Long COVID, POTS, hEDS, and MCAS",  which aims to be "the richest dataset on complex chronic disease ever created". It asks about an impressive array of symptoms and sounds like it may overlap with the patient-led long covid survey you mentioned.

 

I'd like to mention the Open Medicine Foundatiion, which is doing a lot of amazing biomedical research. https://www.omf.ngo/ They're focussing initially on ME and long covid but are interested in other multisystem complex diseaes. The OMF is a big deal. They've raised $45 million and have a Nobel laureate on their board.

 

It would be great if we could get both surveys extended to people with PAWS and get the OMF to work on PAWS. The question is how. Is there any group that could make this happen? The ME survey link is hosted on the ME Action website. There are many patient advocacy organisations for ME but ME Action seems to be a big and active one. Patient advocacy is one of the strengths of the ME community, and way ahead of PAWS from what I've seen.

 

Good luck with your efforts @PeaceInside!

  • 1995-present: on and off various antidepressants, and many changes in dose. Never tapered properly
  • 2012-present: citalopram. Steady dose of 27.5mg since July 2020
  • 2020: pregabalin for 2 months. Very bad withdrawal.
  • Current daily medications: 27.5mg citalopram. 1mg melatonin, 4mg doxazosin, 300mg docusate.
  • My intro topic

 

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Thank you for this information @Tom2020! I am going to take that survey to see how it relates to the other, as well as how it reflects PAWS. 
 

I agree about getting these surveys and these research institutions to include PAWS and (I will include) PSSD in their research because there is so much overlap with these other conditions and PAWS and PSSD are equally complex, chronic conditions. 
 

I have been thinking about your question of “how do we make this happen?” very much lately because I am watching the progression of research and advocacy in other countries on these issues and feel the stagnation of it for PAWS and PSSD in the US. There are great strides being made abroad, in the UK most recently for example, but not seriously here. 
 

We need a large, grassroots, community-led coalition effort to address these issues. 
 

I have been thinking of late of starting a US working group to begin that process-reaching out to all the contacts I have, in addition to trying to connect with likeminded individuals and organizations. 
 

Is this something you’d be interested in? I would like to create a more formal channel for people to take interest in this, but I am still working with PAWS and these things take time. 
 

I do think much more targeted, mass action is most urgently needed and everyone in the US who is even remotely related to this issue needs to begin to work together to make changes because this is a large public health crisis based on the number of people prescribed these drugs annually. 

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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1 hour ago, Tom2020 said:

I've been completing this survey https://www.meaction.net/epi/ "The Chronic Illness Survey Adventure (Symptom Cluster Characterization in Complex Chronic Disease)

Ooh, this looks very cool! I've been looking for more resources on ME/CFS. The survey looks interesting, is it gameified? When I have less of a to-do list (procrastinating by being on here), I'll dive in and find out! I'm already intrigued by how they're presenting this. Thanks again, this is great!

Pronouns: they/them/theirs 

Started on Prozac in early 2000s to treat cPTSD, been on various cocktails ever since.

2002-2004, 2017-2022: Buspar, tapered down to 0

2016-present: 100mg Seroquel for sleep -> May 2023: 90mg -> June 2023: 81mg -> September 2023: 72mg -> switched to brand name, much too strong, down to 60mg -> October 2023: 54mg -> November 2023: 50mg -> January 2024: 45mg

2016-Present: 100mg Wellbutrin SR -> January 2023: 75mg IR (37.5mg 2x a day) -> February 2023 (33.75mg 2x a day) -> July 2023 (30.37mg 2x a day) -> August 2023: 27.33mg 2x a day 

2018-present: 25mg Pristiq

2015-present: 600mg Gabapentin (200mg 3x a day) -> December 2022: 300mg Gabapentin (100mg 3x a day) per GP's recommendation after side effects -> March 2023: 90mg 3x a day (switched to liquid suspension) -> April 2023: 81mg 3x a day -> September 2023: bad generic, switched back to homemade liquid; too strong after bad generic, down to 70mg 3x a day, still bad. Adjusted slowly till at 60mg 3x a day, much better. Long hold till -> December 2023: 54mg, still feels too high after November Seroquel switch from brand name to generic, doc recommended 50mg which feels better -> January 2024: When Wellbutrin went down, Gabapentin started putting me to sleep, went down to 45mg, then 41mg to stay awake, so far so good -> February 2024: 36mg

Supplements: Multivitamin w/magnesium, probiotics, digestive enzymes, anti-viral nitric oxide nose spray as needed

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15 hours ago, littlebird said:

Ooh, this looks very cool! I've been looking for more resources on ME/CFS. The survey looks interesting, is it gameified? When I have less of a to-do list (procrastinating by being on here), I'll dive in and find out! I'm already intrigued by how they're presenting this. Thanks again, this is great!

I'd say it's only superficially gamified, like a game theme rather than game features. You don't get points or rewards other than in an email when you complete each stage of the survey. There are 6 parts and they've released the first 5 so far, about one every six months.

  • 1995-present: on and off various antidepressants, and many changes in dose. Never tapered properly
  • 2012-present: citalopram. Steady dose of 27.5mg since July 2020
  • 2020: pregabalin for 2 months. Very bad withdrawal.
  • Current daily medications: 27.5mg citalopram. 1mg melatonin, 4mg doxazosin, 300mg docusate.
  • My intro topic

 

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ME was largely ignored, for decades, until patient organisations began to change that and I imagine it will be the same for PAWS and PSSD. I don't know what advocacy there is in those areas, and it's great to hear you say there's progress in some countries. Unfortunately, given my heath, I'm not up to contributing much beyond being a sounding board, at least in the near future. I'm also in Canada if that matters.

 

I can see two ways to expand those two surveys to include PAWS and PSSD. One is to minimally expand the ongoing surveys with boxes to indicate if the participant has one of those conditions. That's good because the data is collected by the same people and handled in the same way, so it's consistent with the rest of the data set. The problems are we're asking them to do extra work, though it's really very little, and I for one am just someone off the internet (although the whole idea of patient-led research suggests that shouldn't be such an issue). Nonetheless, it would be better coming from some organisation or established researcher. The current projects don't need to do anything with the extra data on PAWS/PSSD people if they don't want to. On the other hand, they might find it interesting to do some analysis. Ideally, they'd add PAWS and PSSD-specific questions, though that's a bigger ask. Just working out what those questions should be is an issue.

 

The other way is to run a new survey with the same questions at some time when it can be arranged. This means getting funding (or maybe volunteers) to run it but PAWS and PSSD-specific questions could be added. Hopefully we could get access to the original data for comparison and reanalysis.

 

Either way, it would be ideal if some PAWS/PSSD organisation(s) could pick this up and run with it. I don't know what organisations are out there. Aproaching them is an idea but also maybe a very concrete objective like getting these surveys done would be a good nucleus to organise around - could that be a starting point for your working group?

  • 1995-present: on and off various antidepressants, and many changes in dose. Never tapered properly
  • 2012-present: citalopram. Steady dose of 27.5mg since July 2020
  • 2020: pregabalin for 2 months. Very bad withdrawal.
  • Current daily medications: 27.5mg citalopram. 1mg melatonin, 4mg doxazosin, 300mg docusate.
  • My intro topic

 

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It's crazy because I have seen numerous Long Covid people on Reddit who share 100% the same symptoms such as those who were harmed by SSRIs including things like sexual dysfunction, genital numbness, GI issues, overall dysautonomia, anhedonia and so on. There are people who have tested for ridiculously high autoantibodies, the same found in Long Covid sufferers. @Faust and others recovered with some supplements, or by treating their gut. Maybe there is an immunological mechanism behind both syndromes.

Venlafaxine 75mg, 150mg, 225mg December 2020 - March 2021

Sertraline 50mg, 100mg March 2021 - April 2021

Escitalopram 10mg, 20 mg April 2021 - May 2021

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@Tom2020 those are really useful ideas thank you! I am going to give this all a think. I am working on starting something more concrete in the USA very slowly, but appreciate all sounding boards, so thank you :) May I ask, what is your work/academic background? Do you have experience in research?

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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@Fairsome there's definitely neuro-immunological components involved. I am very interested in what the concrete differences are between these conditions, if there are any, and how methodologies of healing would need to be different. 

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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25 minutes ago, PeaceInside said:

@Fairsome there's definitely neuro-immunological components involved. I am very interested in what the concrete differences are between these conditions, if there are any, and how methodologies of healing would need to be different. 

The drug BC 007 appears very promising in curing Long Covid symptoms. I have no idea if it could also help the SSRI-harmed people.

Venlafaxine 75mg, 150mg, 225mg December 2020 - March 2021

Sertraline 50mg, 100mg March 2021 - April 2021

Escitalopram 10mg, 20 mg April 2021 - May 2021

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@Fairsome interesting. For anyone reading: https://www.berlincures.com/en/bc-007-pipeline

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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@PeaceInside Maybe you should look at what I posted in the PSSD topic recently (the text was written a year ago and it is possible that you have already seen it). If this is true it's great news for many people...

 

At the University of Milan, the devastation of SSRI withdrawal effects continues to be better explored by the Professor Roberto Melcang's team. The findings have pointed to an explosion of pro-inflammatory cytokines and an autoimmune reaction in the body that worsens during withdrawal. Just as the theories of serotonin as the main effect of the drug have been overthrown in science, at the same time the serotonin-related theories of the so-called withdrawal symptoms were also overthrown. Good! It appears that almost all SSRI side effects and withdrawal effects are mediated through an immunological mechanism - an unfortunate large proportion develop autoimmune diseases as part of these drugs. In the light of current knowledge, the withdrawal symptoms are also a "disease", which fortunately for some subsides on its own, but for some it never subsides without treatment. Long Covid and Post SSRI syndromes seem to act through a common etiology, a logical mechanism. Attached is a yet-to-be published article. In PSSD support, the patients are currently the only ones in Finland to collect comprehensive antibody tests for the G-protein group, and these are analyzed in Germany. Article:

 

PSSD / protracted withdrawal patients report extremely debilitating and long lasting symptoms of a wide spectrum. The symptomology of these patients can differ from patient to patient, but commonly reported problems include: Fatigue, emotional blunting, demotivation, anhedonia, vertigo, tinnitus, sensory disturbances, sexual dysfunction, decreased or absent libido, altered smell and taste, chest pain, headache, "head pressure", shortness of breath, muscle pain, muscle weakness, bladder functioning problems, sleep disturbances, tremors or other movement disorders, cognitive declain (memory), GI problems, dysautonomia, dry eyes and dry skin, altered circulation, QT prolonging, altered body temperature control, blurred vision, suicidal thoughts and other neuropsyciatric symptoms. Interestingly recent evidence of Long Covid patients and Covid vaccination harmed patients report exactly similar symptomatology compared to several Post SSRI Patients.

New studies found sexual dysfunction extremely common among Long Covid (1,2,3,) Decreased or absent libido, ejaculation problems in men and arousal problems are often mentioned by long covid sufferes. Cambridge has documented anorgasmia as one of the long covid symptoms, anecdotal reports exist in many forums (4,) Different internet forums are full of people claiming that they developed genital numbness after covid or during long covid (6). Even though sexual dysfunction has been detected being one of the widest symptoms of long covid (5) it can be assumed being severely underreported due to the nature of the problem. Small fiber neuropathy, often with autonomic involvement, seems to be a typical finding after covid infection or among long covid (7,8,9,10,11,12). Also post Covid vaccine small fiber neuropathy is well documented in the medical literature (13,14,15,16,17). Tinnitus and changes in hearing are also possible in long covid (18,19). Interestingly also anhedonia, apathy and mood problems are well known complications of long covid (20,21,22,23). Even QT prolonging is documented being related to Covid infection (24,25,26). Also covid vaccine induced long QT and syncope are not rare (27,28,29). Interestingly we see all these claims and problems also among PSSD and protracted withdrawal patients.

 

As well as SSRIs also Covid and vaccination are associated with vasculitis (30,31,32,33,34,35,36,37,38,39,40). Movement disorders again are both well known events after SSRIs and Covid - kinetic movement disorders are also present post covid infection (41,42,43,44,45,46,47,48). Interestingly even post covid vaccine akathisias are starting to be documented (49).

 

Surely a question needs to be asked: Why can covid, covid vaccine and SSRIs all induce similar problems and also clinically 100 % similar syndromes?

The Spike protein of the Covid virus gets into cells through ACE-2 receptors. Both the people who are vaccinated against covid and people who had covid infection produce autoantibodies to ACE-2. Interestingly also SSRIs act on ACE-2 receptors (50). Anecdotal cases reported positive ACE-2 without vaccination or previous covid infection - but claimed having an active Post SSRI syndrome.

 

Anyhow the name of the SSRI drug (selective serotonin reuptake inhibitor) seems to mislead both the patients and doctors when trying to understand the mechanisms behind drug hazards. A scandinavian patient manifested with full-blown SSRI "withdrawal" symptoms and PSSD symptoms. After hundreds of hours of research this patient came up with an idea that this could be severe long Covid syndrome even though this patient had not got covid infections nor covid vaccines. Research and hypothesis made this patient requiring autoantibody tests involving all functional autoantibodies against protein G. Findings were positive and totally abnormal. All symptoms of this patient manifested just after a few weeks of SSRI use and worsened during / after withdrawal. No infections were detected but leukocytosis was found. The symptomology pretty much correlated to the autoantibodies found. A reduced blood flow with this same patient was confirmed in the Lung / Heart CT scan where the contrast agent did not spread normally in the tiniest blood vessels / capillaries. No clear embolization was found though. Soon after more PSSD people claimed to have tested positive against these rare autoantibodies as well. Some of these patients never had a covid vaccine nor covid infection. These functional G protein autoantibodies can be tested only in very rare special laboratories. Functional G protein autoantibodies are recently seen all the time among long covid patients when investigated (51,52,53,54,55). Auto-antibodies against protein G are associated with cognitive and vascular dysfunction, as well as neuroinflammation, blood-brain-barrier dysfunction and vascular inflammation. Even severe neuropsychiatric symptoms are associated with some of these auto-antibodies.

Interestingly neutralization of functional autoantibodies against protein G from Long Covid patients by using BC007 infusion ended-up with a significant recovery just within hours after treatment and a complete recovery later. Even problems with severe anhedonia, apathy, brain fog, demotivation, memory, behaviour, cognition, smell and taste, fatigue, circulation, twitching muscle, muscle pain, blood pressure, heart rejection, dysautonomia, shortness of breath, tremors, weakness resolved (56,57,58,59). Immunoadsorption therapy is also effective, but doesn't lead to a permanent cure as bc007 does.

 

Recent data has shown that Long Covid patients regularly suffer from sexual dysfunction, decreased or zero libido and anhedonia. 60% of Long Covid patients also have Small Fiber Neuropathy. Long Covid is even associated with problems such as ejaculation dysfunction and difficulty getting orgasm. Muscarinic receptor and Sexual Functioning are also related. Both PSSD patients and Long Covid patients can get their symptoms directly when on meds / during active infection but others crash weeks or even months after - likely due to immunological response. Functional auto-antibodies to protein G are responsible for reduced circulation and even micro clotting together with vascular dysfunction. Reduced circulation / blood flow in key brain areas leads to debilitating symptoms from nausea to anhedonia, demotivation, muscle weakness, tremors, dysautonomia etc. Changes in circulation have been documented in Post Covid / Long Covid cases (60,62,63,64,65,66,67,68,70,. Interestingly, anecdotal SPECT scans of PSSD and SSRI withdrawal syndrome patients show reduction in blood flow in many brain areas which correlates to studies pointing to SSRIs decreasing brain activity similar to severe long covid or covid.

 

Dr. Melcangi and his team has recently shown that Paroxetine treatment and withdrawal changed neurosteroids of rats (71). The same team has shown a profound effect of Paroxetine treatment in gut microbiota (72). Also other teams have claimed similar results. It is well known that neurosteroid synthesis can be substantially affected by neuroinflammation. Gut-microbiota-brain axis is a widely researched area in autoimmune diseases and neurological manifestations. Interestingly both SSRIs and Covid are associated with increased risk of developing Diabetes.

 

This all could be linked to autoimmunity involving endothelial dysfunction, again linked to rare antibodies against protein G. Regional brain perfusion as well as endothelial abnormalities are directly linked to altered mood, cognition, sexual performace and behaviour. As autoantibodies against protein G are linked also to dry eye syndrome, altered sweating and salivary function which are relatively often described from patients harmed by SSRI treatments, a full circle is closing and should be investigated as early as possible. Is PSSD in a keen relation to long covid via specific autoantibodies which require special treatments?

Venlafaxine 75mg, 150mg, 225mg December 2020 - March 2021

Sertraline 50mg, 100mg March 2021 - April 2021

Escitalopram 10mg, 20 mg April 2021 - May 2021

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On 12/7/2023 at 3:19 PM, Tom2020 said:

The other way is to run a new survey with the same questions at some time when it can be arranged.

I've been itching to run some polls on here out of curiosity. 

 

On 12/6/2023 at 9:09 PM, Tom2020 said:

I've been completing this survey https://www.meaction.net/epi/

This is amazing, thank you so much for sharing it. I'm making connections and realizing that more symptoms than I thought might be related to this. Starting to get a wee bit depressed with how much my life has been impacted by this and might take a lil survey break to have some chronic illness feelings and do some self-care.

 

Thanks again, this is a fantastic resource. Looking forward to seeing what they learn from this! With Long Covid eating so many people up, there will only be more of us on the ME/CFS train in the future. 

Pronouns: they/them/theirs 

Started on Prozac in early 2000s to treat cPTSD, been on various cocktails ever since.

2002-2004, 2017-2022: Buspar, tapered down to 0

2016-present: 100mg Seroquel for sleep -> May 2023: 90mg -> June 2023: 81mg -> September 2023: 72mg -> switched to brand name, much too strong, down to 60mg -> October 2023: 54mg -> November 2023: 50mg -> January 2024: 45mg

2016-Present: 100mg Wellbutrin SR -> January 2023: 75mg IR (37.5mg 2x a day) -> February 2023 (33.75mg 2x a day) -> July 2023 (30.37mg 2x a day) -> August 2023: 27.33mg 2x a day 

2018-present: 25mg Pristiq

2015-present: 600mg Gabapentin (200mg 3x a day) -> December 2022: 300mg Gabapentin (100mg 3x a day) per GP's recommendation after side effects -> March 2023: 90mg 3x a day (switched to liquid suspension) -> April 2023: 81mg 3x a day -> September 2023: bad generic, switched back to homemade liquid; too strong after bad generic, down to 70mg 3x a day, still bad. Adjusted slowly till at 60mg 3x a day, much better. Long hold till -> December 2023: 54mg, still feels too high after November Seroquel switch from brand name to generic, doc recommended 50mg which feels better -> January 2024: When Wellbutrin went down, Gabapentin started putting me to sleep, went down to 45mg, then 41mg to stay awake, so far so good -> February 2024: 36mg

Supplements: Multivitamin w/magnesium, probiotics, digestive enzymes, anti-viral nitric oxide nose spray as needed

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On 12/8/2023 at 6:17 PM, littlebird said:

I've been itching to run some polls on here out of curiosity.

Does the website have any support for polls or would you have to collate the results manually?

 

You're very welcome for the survey @littlebird. I'm glad it's interesting and sorry it got you down. It can be hard to think about all the negative details of chronic illness. It's a marathon to complete the survey but hopefully all that data will turn out to be really good.

  • 1995-present: on and off various antidepressants, and many changes in dose. Never tapered properly
  • 2012-present: citalopram. Steady dose of 27.5mg since July 2020
  • 2020: pregabalin for 2 months. Very bad withdrawal.
  • Current daily medications: 27.5mg citalopram. 1mg melatonin, 4mg doxazosin, 300mg docusate.
  • My intro topic

 

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On 12/8/2023 at 2:46 PM, Fairsome said:

@PeaceInside Maybe you should look at what I posted in the PSSD topic recently (the text was written a year ago and it is possible that you have already seen it). If this is true it's great news for many people...

 

At the University of Milan, the devastation of SSRI withdrawal effects continues to be better explored by the Professor Roberto Melcang's team. The findings have pointed to an explosion of pro-inflammatory cytokines and an autoimmune reaction in the body that worsens during withdrawal. Just as the theories of serotonin as the main effect of the drug have been overthrown in science, at the same time the serotonin-related theories of the so-called withdrawal symptoms were also overthrown. Good! It appears that almost all SSRI side effects and withdrawal effects are mediated through an immunological mechanism - an unfortunate large proportion develop autoimmune diseases as part of these drugs. In the light of current knowledge, the withdrawal symptoms are also a "disease", which fortunately for some subsides on its own, but for some it never subsides without treatment. Long Covid and Post SSRI syndromes seem to act through a common etiology, a logical mechanism. Attached is a yet-to-be published article. In PSSD support, the patients are currently the only ones in Finland to collect comprehensive antibody tests for the G-protein group, and these are analyzed in Germany. Article:

 

PSSD / protracted withdrawal patients report extremely debilitating and long lasting symptoms of a wide spectrum. The symptomology of these patients can differ from patient to patient, but commonly reported problems include: Fatigue, emotional blunting, demotivation, anhedonia, vertigo, tinnitus, sensory disturbances, sexual dysfunction, decreased or absent libido, altered smell and taste, chest pain, headache, "head pressure", shortness of breath, muscle pain, muscle weakness, bladder functioning problems, sleep disturbances, tremors or other movement disorders, cognitive declain (memory), GI problems, dysautonomia, dry eyes and dry skin, altered circulation, QT prolonging, altered body temperature control, blurred vision, suicidal thoughts and other neuropsyciatric symptoms. Interestingly recent evidence of Long Covid patients and Covid vaccination harmed patients report exactly similar symptomatology compared to several Post SSRI Patients.

New studies found sexual dysfunction extremely common among Long Covid (1,2,3,) Decreased or absent libido, ejaculation problems in men and arousal problems are often mentioned by long covid sufferes. Cambridge has documented anorgasmia as one of the long covid symptoms, anecdotal reports exist in many forums (4,) Different internet forums are full of people claiming that they developed genital numbness after covid or during long covid (6). Even though sexual dysfunction has been detected being one of the widest symptoms of long covid (5) it can be assumed being severely underreported due to the nature of the problem. Small fiber neuropathy, often with autonomic involvement, seems to be a typical finding after covid infection or among long covid (7,8,9,10,11,12). Also post Covid vaccine small fiber neuropathy is well documented in the medical literature (13,14,15,16,17). Tinnitus and changes in hearing are also possible in long covid (18,19). Interestingly also anhedonia, apathy and mood problems are well known complications of long covid (20,21,22,23). Even QT prolonging is documented being related to Covid infection (24,25,26). Also covid vaccine induced long QT and syncope are not rare (27,28,29). Interestingly we see all these claims and problems also among PSSD and protracted withdrawal patients.

 

As well as SSRIs also Covid and vaccination are associated with vasculitis (30,31,32,33,34,35,36,37,38,39,40). Movement disorders again are both well known events after SSRIs and Covid - kinetic movement disorders are also present post covid infection (41,42,43,44,45,46,47,48). Interestingly even post covid vaccine akathisias are starting to be documented (49).

 

Surely a question needs to be asked: Why can covid, covid vaccine and SSRIs all induce similar problems and also clinically 100 % similar syndromes?

The Spike protein of the Covid virus gets into cells through ACE-2 receptors. Both the people who are vaccinated against covid and people who had covid infection produce autoantibodies to ACE-2. Interestingly also SSRIs act on ACE-2 receptors (50). Anecdotal cases reported positive ACE-2 without vaccination or previous covid infection - but claimed having an active Post SSRI syndrome.

 

Anyhow the name of the SSRI drug (selective serotonin reuptake inhibitor) seems to mislead both the patients and doctors when trying to understand the mechanisms behind drug hazards. A scandinavian patient manifested with full-blown SSRI "withdrawal" symptoms and PSSD symptoms. After hundreds of hours of research this patient came up with an idea that this could be severe long Covid syndrome even though this patient had not got covid infections nor covid vaccines. Research and hypothesis made this patient requiring autoantibody tests involving all functional autoantibodies against protein G. Findings were positive and totally abnormal. All symptoms of this patient manifested just after a few weeks of SSRI use and worsened during / after withdrawal. No infections were detected but leukocytosis was found. The symptomology pretty much correlated to the autoantibodies found. A reduced blood flow with this same patient was confirmed in the Lung / Heart CT scan where the contrast agent did not spread normally in the tiniest blood vessels / capillaries. No clear embolization was found though. Soon after more PSSD people claimed to have tested positive against these rare autoantibodies as well. Some of these patients never had a covid vaccine nor covid infection. These functional G protein autoantibodies can be tested only in very rare special laboratories. Functional G protein autoantibodies are recently seen all the time among long covid patients when investigated (51,52,53,54,55). Auto-antibodies against protein G are associated with cognitive and vascular dysfunction, as well as neuroinflammation, blood-brain-barrier dysfunction and vascular inflammation. Even severe neuropsychiatric symptoms are associated with some of these auto-antibodies.

Interestingly neutralization of functional autoantibodies against protein G from Long Covid patients by using BC007 infusion ended-up with a significant recovery just within hours after treatment and a complete recovery later. Even problems with severe anhedonia, apathy, brain fog, demotivation, memory, behaviour, cognition, smell and taste, fatigue, circulation, twitching muscle, muscle pain, blood pressure, heart rejection, dysautonomia, shortness of breath, tremors, weakness resolved (56,57,58,59). Immunoadsorption therapy is also effective, but doesn't lead to a permanent cure as bc007 does.

 

Recent data has shown that Long Covid patients regularly suffer from sexual dysfunction, decreased or zero libido and anhedonia. 60% of Long Covid patients also have Small Fiber Neuropathy. Long Covid is even associated with problems such as ejaculation dysfunction and difficulty getting orgasm. Muscarinic receptor and Sexual Functioning are also related. Both PSSD patients and Long Covid patients can get their symptoms directly when on meds / during active infection but others crash weeks or even months after - likely due to immunological response. Functional auto-antibodies to protein G are responsible for reduced circulation and even micro clotting together with vascular dysfunction. Reduced circulation / blood flow in key brain areas leads to debilitating symptoms from nausea to anhedonia, demotivation, muscle weakness, tremors, dysautonomia etc. Changes in circulation have been documented in Post Covid / Long Covid cases (60,62,63,64,65,66,67,68,70,. Interestingly, anecdotal SPECT scans of PSSD and SSRI withdrawal syndrome patients show reduction in blood flow in many brain areas which correlates to studies pointing to SSRIs decreasing brain activity similar to severe long covid or covid.

 

Dr. Melcangi and his team has recently shown that Paroxetine treatment and withdrawal changed neurosteroids of rats (71). The same team has shown a profound effect of Paroxetine treatment in gut microbiota (72). Also other teams have claimed similar results. It is well known that neurosteroid synthesis can be substantially affected by neuroinflammation. Gut-microbiota-brain axis is a widely researched area in autoimmune diseases and neurological manifestations. Interestingly both SSRIs and Covid are associated with increased risk of developing Diabetes.

 

This all could be linked to autoimmunity involving endothelial dysfunction, again linked to rare antibodies against protein G. Regional brain perfusion as well as endothelial abnormalities are directly linked to altered mood, cognition, sexual performace and behaviour. As autoantibodies against protein G are linked also to dry eye syndrome, altered sweating and salivary function which are relatively often described from patients harmed by SSRI treatments, a full circle is closing and should be investigated as early as possible. Is PSSD in a keen relation to long covid via specific autoantibodies which require special treatments?

@Fairsome can you send me the original article pertaining to this? Do you have any research information that has followed from where this left off? I belong to the PSSD Network whatsapp groups as well and have been keeping up with Melcang's research but did not come across this. My doctors are wanting to read more research about PAWS/PSSD so I would love to be able to show them this. 

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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14 hours ago, Tom2020 said:

Does the website have any support for polls or would you have to collate the results manually?

 

You're very welcome for the survey @littlebird. I'm glad it's interesting and sorry it got you down. It can be hard to think about all the negative details of chronic illness. It's a marathon to complete the survey but hopefully all that data will turn out to be really good.

It looks like we would have to create our own surveys similar to what all these other orgs have done. We really need a massive, comprehensive PAWS and PSSD survey for people to participate in, in the United States I think to get the ball rolling.

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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1 hour ago, PeaceInside said:

It looks like we would have to create our own surveys similar to what all these other orgs have done. We really need a massive, comprehensive PAWS and PSSD survey for people to participate in.

I would love to see it! Makes me wonder if there is any funded research working on this, or any organizations that might fund such a thing. Went down a little rabbit hole of what labs and studies are looking at all this, didn't find much in the US but there is a study in the UK that's wrapping up this month! Sounds like they actively took participants off meds for it, curious to read what comes of it. On a related note: anyone got a way around the academic paywall for studies? 😅

Pronouns: they/them/theirs 

Started on Prozac in early 2000s to treat cPTSD, been on various cocktails ever since.

2002-2004, 2017-2022: Buspar, tapered down to 0

2016-present: 100mg Seroquel for sleep -> May 2023: 90mg -> June 2023: 81mg -> September 2023: 72mg -> switched to brand name, much too strong, down to 60mg -> October 2023: 54mg -> November 2023: 50mg -> January 2024: 45mg

2016-Present: 100mg Wellbutrin SR -> January 2023: 75mg IR (37.5mg 2x a day) -> February 2023 (33.75mg 2x a day) -> July 2023 (30.37mg 2x a day) -> August 2023: 27.33mg 2x a day 

2018-present: 25mg Pristiq

2015-present: 600mg Gabapentin (200mg 3x a day) -> December 2022: 300mg Gabapentin (100mg 3x a day) per GP's recommendation after side effects -> March 2023: 90mg 3x a day (switched to liquid suspension) -> April 2023: 81mg 3x a day -> September 2023: bad generic, switched back to homemade liquid; too strong after bad generic, down to 70mg 3x a day, still bad. Adjusted slowly till at 60mg 3x a day, much better. Long hold till -> December 2023: 54mg, still feels too high after November Seroquel switch from brand name to generic, doc recommended 50mg which feels better -> January 2024: When Wellbutrin went down, Gabapentin started putting me to sleep, went down to 45mg, then 41mg to stay awake, so far so good -> February 2024: 36mg

Supplements: Multivitamin w/magnesium, probiotics, digestive enzymes, anti-viral nitric oxide nose spray as needed

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1 hour ago, littlebird said:

I would love to see it! Makes me wonder if there is any funded research working on this, or any organizations that might fund such a thing. Went down a little rabbit hole of what labs and studies are looking at all this, didn't find much in the US but there is a study in the UK that's wrapping up this month! Sounds like they actively took participants off meds for it, curious to read what comes of it. On a related note: anyone got a way around the academic paywall for studies? 😅

@littlebird there are orgs and universities outside the US working on this but I’ve found none in the US. 
 

If you want to read research/academic papers reach out to the authors of the papers directly. Google them, find their emails and let them know you’re interested in reading their work but it’s behind a paywall you can’t access. 9 times out of 10 they will be thrilled someone wants to read their stuff and send you the paper directly. Also if you are an alumni of a university check with your school-many schools give their alums access to JSTOR for example for life after graduation with the use of the school email or sometimes just your regular email. These things have worked for me in the past. 

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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8 minutes ago, PeaceInside said:

Google them, find their emails and let them know you’re interested in reading their work but it’s behind a paywall you can’t access. 9 times out of 10 they will be thrilled someone wants to read their stuff and send you the paper directly.

This is so smart, thank you! Great idea. 

Pronouns: they/them/theirs 

Started on Prozac in early 2000s to treat cPTSD, been on various cocktails ever since.

2002-2004, 2017-2022: Buspar, tapered down to 0

2016-present: 100mg Seroquel for sleep -> May 2023: 90mg -> June 2023: 81mg -> September 2023: 72mg -> switched to brand name, much too strong, down to 60mg -> October 2023: 54mg -> November 2023: 50mg -> January 2024: 45mg

2016-Present: 100mg Wellbutrin SR -> January 2023: 75mg IR (37.5mg 2x a day) -> February 2023 (33.75mg 2x a day) -> July 2023 (30.37mg 2x a day) -> August 2023: 27.33mg 2x a day 

2018-present: 25mg Pristiq

2015-present: 600mg Gabapentin (200mg 3x a day) -> December 2022: 300mg Gabapentin (100mg 3x a day) per GP's recommendation after side effects -> March 2023: 90mg 3x a day (switched to liquid suspension) -> April 2023: 81mg 3x a day -> September 2023: bad generic, switched back to homemade liquid; too strong after bad generic, down to 70mg 3x a day, still bad. Adjusted slowly till at 60mg 3x a day, much better. Long hold till -> December 2023: 54mg, still feels too high after November Seroquel switch from brand name to generic, doc recommended 50mg which feels better -> January 2024: When Wellbutrin went down, Gabapentin started putting me to sleep, went down to 45mg, then 41mg to stay awake, so far so good -> February 2024: 36mg

Supplements: Multivitamin w/magnesium, probiotics, digestive enzymes, anti-viral nitric oxide nose spray as needed

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@PeaceInsideand @littlebirdif you come across a question on the survey that lets you list diagnoses could you let me know please? I've been completing the stages as they come out every 6 months or so, so I can't recall. If there is a place to indicate you have PAWS or PSSD then some analysis could be done on those people without adding questions to the survey at all!

  • 1995-present: on and off various antidepressants, and many changes in dose. Never tapered properly
  • 2012-present: citalopram. Steady dose of 27.5mg since July 2020
  • 2020: pregabalin for 2 months. Very bad withdrawal.
  • Current daily medications: 27.5mg citalopram. 1mg melatonin, 4mg doxazosin, 300mg docusate.
  • My intro topic

 

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47 minutes ago, Tom2020 said:

@PeaceInsideand @littlebirdif you come across a question on the survey that lets you list diagnoses could you let me know please? I've been completing the stages as they come out every 6 months or so, so I can't recall. If there is a place to indicate you have PAWS or PSSD then some analysis could be done on those people without adding questions to the survey at all!

Will do! I haven’t started it yet but am hoping to as I have break in the coming week. I know in the other long-Covid survey they did have that question about other diagnosis. 

2012-2013: Sertraline (100mg)

April 2013-May 2013: tapered completely off Sertraline (50mg for two weeks, then 25mg for two weeks, then none)

May 2013-November 2013: experienced severe withdrawal effects

November 2013-2018: Sertraline (100mg then up to 200mg then back to 100mg over this time)

January 2018: abrupt switch to Effexor; extreme withdrawal side effects from switch; used Lorazepam for 2 days to cope

February 2018-April 2018: abrupt switch to Prozac (maybe 30mg or 20mg?? do not remember)

April 2018-September 2019: tapered off Prozac completely using liquid form (do not remember by what increments); experienced windows and waves pattern of withdrawal

September 2019-January 2020: felt really great, better than ever before

February 2020-April 2021: experienced severe withdrawal in windows and waves pattern

April 2021-NOW: windows and waves pattern ended; experiencing drastic change in digestive, endocrine, autonomic, and immune system functioning

 

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That's great. Thank you!

  • 1995-present: on and off various antidepressants, and many changes in dose. Never tapered properly
  • 2012-present: citalopram. Steady dose of 27.5mg since July 2020
  • 2020: pregabalin for 2 months. Very bad withdrawal.
  • Current daily medications: 27.5mg citalopram. 1mg melatonin, 4mg doxazosin, 300mg docusate.
  • My intro topic

 

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