Nicholas Boyd-Gibbins, MEng, PhD
@NBoydGibbins
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UCL | Kyoto Univ. | CSO | cell engineering, cell therapy, immunotherapy, autoimmune, long COVID, iPSCs, cancer, genetics and neuroscience @amaticahealth
Joined May 2012
Has any single data set ever described so much.
Last year was the warmest since records began. It was the first year in which average global temperatures at the surface exceeded 1.5C above pre-industrial levels and the warmest year on record by a large margin – at between 1.34C and 1.54C above pre-industrial levels.
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I have been worried for some time that increased cancer rates would be a secondary fallout of the pandemic. The key findings were increased stomach cancer and one subgroup of breast cancer rates 1/
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This data is I think one of the most important findings in ME/CFS and ME/CFS-like long Covid research. It shows that the S1 spike protein subunit can cause mitochondrial fragmentation, part of the "mitochondrial pathogen response".
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I’m sharing this with the permission of the patient . This is from a long Covid / ME/CFS patient. Their doctor told them this was normal
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Muscle weakness in ME/CFS. Some leading ME/CFS researchers and I will submit a grant proposal to study the mechanisms of muscle weakness. If successful it would be by far the deepest study into MW. People with MW, how would you describe your symptom?. Does it correlate with PEM?.
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This data is from a clinical trial in the US using vagus nerve stimulation to treat POTS. The study used low-level transcutaneous stimulation delivered by an ear-mounted device for 1 hour per day over a 2-month period
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This data is insane. LC patients who had worse anxiety, depression etc (COOP chart scores 4 and 5) had higher blood levels of COVID RNAs and lower overall immunometabolism scores
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If anyone knows the family of this poor girl please can you help us connect with them. We want to offer her free biological testing to show her doctors the seriousness of her condition and maybe aid in direction for compassionate drug use.
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I know a guy with severe viral-triggered ME/CFS (which is what most severe LC cases are) who for 4 years could only open his eyes for 4 hours per day. I know another woman who can’t handle reading or watching anything without triggering severe worsening. She spent 2 years lying.
What she says about these patients is utterly heartbreaking. It mirrors what I see. Some cannot stand up due to severe #POTS.Some are in wheelchairs .Some are in bed 23 hours a day with only 15 minutes where they can speak .#LongCovid
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So many things are pointing to mitochondria involvement in ME/CFS and ME-like long Covid. People are finding high plasma lactate, @BhupeshPrusty is following a fascinating line of work on mitochondria fragmentation. There’s a good case to do everything to support mitochondria.
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I triggered neuroinflammation (I’m guessing) from overwork yesterday. My physical PEM is very different from my neuro. Last time I did this it lead to months of insomnia and very bad short term memory. Im trying my updated PEM tool kit as below ⬇️.
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This circulated as a preprint, showing spike protein persisting in LC patients. This does point to a viral reservoir, and could also explain why people get transiently better taking a Paxlovid. It would be great to test longer term patients
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Long Covid and ME/CFS are not sub-clinical. It’s a myth. There are dozens of biomarkers. Right now patients are getting themselves tested after being failed by healthcare systems.
There is much evidence of biomedical abnormalities in #LongCovid patients, & a range of biomarkers that, in studies, have effectively distinguished Long Covid patients from controls time & again. So how 3 years on – just how – do we not have a single Long Covid clinical test?.
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Hiring from the patient community. Amatica Health is looking to hire a member of the patient community (ME/CFS, Long COVID or vaccine injured) to a part time, fully remote role. £15/hour. We hope to be hiring more members of the community over time
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I've spoken to many of the top ME/CFS researchers in the world and all of them told me they struggle to get funding. Today I heard about one of the top ME/CFS research clinicians asking for advice from a top scientist and saying they may have to change focus.
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People with long Covid have reduced serotonin levels. This new collaborative study from the US in Cell has some amazing data. First, this figure shows the relative abundance of metabolites. Serotonin was among the most depleted in the LC cohort, with KP metabolites increased
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This graph shows serum from ME/CFS with orthostatic intolerance being added to human microglia cells and causing an increase in Reactive Oxygen Species (ROS) production. So the ME/CFS serum is causing an increase in production of damaging ROS
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Patient led research - 6 spaces open to test 30 blood markers at raw cost. These markers may help us classify ME/CFS / LC, testing states of important systems and giving insight into our personal disease manifestations. Some have never been tested in ME/CFS or LC. @amaticahealth
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Given the recent research on serotonin deficiency in LC and ME/CFS, and given that it has been linked to problems in the gut, has anyone (or everyone) thought through a good protocol to address this?. I just started taking 5-HTP and I will research but would love any ideas.
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I (Covid-ME/CFS) have been using sublingual NAD, 25mg once a day for a week and now twice a day. Since June nicotine has improved me by about 10-20% overall. I am now starting to think the NAD is helping. I’ve had by far my best days since falling sick in the last few days.
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Has anyone found anything that can help with tinnitus?. My friend developed bad tinnitus from the 💉. She tried nicotine which helped a bit and how she’s moving to patches. Nattokinase made it worse. Maybe paints a picture that spike is the problem. Any ideas would be appreciated.
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Please comment your LC / ME/CFS symptom that most questionnaires overlook. We are building on existing questionnaires to make (i) an extensive symptom profile that can be completed over time, and (ii) a short questionnaire for the morning and evening before/after blood draw
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I have no affiliation but I recently saw a LC / ME/CFS patient saying they had a big response to the medical probiotic VSL#3. We know about gut dysbiosis in this disease, and this product is a medical supplement with high potency for treating IBS (which is an autoimmune disease)
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And this review that highlights that 12% of all human cancers are causes by viral infections. This works through various mechanisms including oncogenic viral proteins, DNA damage, and host defenses. Frequent reinfection increases risk in some cases.
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@NataliaHodgins I pray that we get you back out there and you can make up for lost time, as much as possible.
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Stomach cancer was found to be up across all Covid-infected groups, and the authors highlight the known persistence of Covid in the gut where enterocytes express high levels ACE2. They also cite previous work showing various mechanisms for viral induced cancers.
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This study seems to attract some controversy but I think it holds water. They highlight that the HER2-positive breast cancer subtype they found increased rates of expresses high levels of ACE2, which could well be related
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We know that spike can persist long term even in the absence of viral RNA and nucelocaspid, meaning that it may just be very stable in the human body. I think it would be fantastic to make testing for S1 protein routine in LC patients.
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The key concept for me is that S1 may be enough alone to trigger ME/CFS. If so then that explains why many #vaccineinjured have developed ME/CFS. And given all of the work that was known about spike from SARS1 (some patients are still chronically ill more than 18 years later).
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One of the worst parts of ME/CFS for me is the idea that we could get better, remission could be possible. And so what, suffer for decades in the atrophied shell of the person you were watching everything you dreamed of and built burn?. Decades later will it seem worth it?.
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Schrödinger’s ME/CFS: . All at once ‘fatigue’, deconditioning, anxiety, and something that disqualifies you from donating blood for life.
Firstly, @NHSuk & @NHSEngland, ME is not "fatigue". Secondly, if ME is psychological and/or functional, as so many NHS doctors working for you claim (some of whom I have seen personally) then why are patients not eligible to donate blood? I'm still waiting for an answer. #ME
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I just heard about a patient with ME/CFS and MCAS acquire an immunotherapy drug from the global south for $800. The treatment cost in the west is $80,000 per year.
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Thanks to @oliver_phil for bringing this study to my attention that shows long term depletion and functional impairment of dendritic cells, which are important in our body’s defence against cancer. For breast cancer there is a clear known mechanism
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Among the work they cite is this study from France that showed that in 2018 there were 2.2 million virus infection-attributed cancer cases worldwide (25/100,000), with some viruses showing much higher rates of induced cancer in lower income countries
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People are talking about the role of structural problems in ME/CFS and LC right now. Some patients respond to CCI interventions. One possibility is that activated immune cells including microglia in the brain are degrading collagen, ECM, call junctions etc
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@carolvorders @alanjstedman @jmitch78278477 Let’s also remember that GCHQ, NSA, CIA, Pegasus etc can access anything they want. So we are just being told they can’t get the messages when all types of human rights activists and people shining a light on the crimes of the powerful had their phones hacked by the Government.
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What is the real prevalence of ME/CFS?. I was looking for some numbers on prevalence to plan a project . The rates I see are over 1%. More than 1000 per 100,000. Has every social group always had one person who’s life was destroyed by ME/CFS?. Did every group think it was rare?.
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For this study we want to include the groups:. 1. ME/CFS - muscle weakness.2. ME/CFS + muscle weakness.3. Control. So to do this we need to be able to define the group with muscle weakness really well. Any help with this is much appreciated.
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This feels like a breakthrough to me. The hypothesis about the involvement of mitochondrial pathogen responses, and the study in the thread below I think connect some really important dots. We know mitochondria are involved. Can we now test mtDNA during PEM the pathogen response?.
Could mitochondrial tissue interactions with pathogens be a key component in the development of post exertional malaise?. An idea that is potentially testable in the laboratory.
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I think a lot of people have already been working to this hypothesis, but this data really does suggest that targeting the vagus nerve has therapeutic potential for POTS and various other aspects of ME/CFS. The human data is really encouraging.
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Maybe I’m oversimplifying or extrapolating so much but the question this new viral persistence preprint leaves me with is, are the persistent viral components or the host response the bigger problem?.
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@NickJParry @marksaggers @thepuller1 @GaryLineker @Wimbledon @JustStop_Oil This guy would have been denouncing the suffragettes.
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And it also raises the question of why supposed experts thought it was a good strategy to use S1 in the 💉. And also why Peter Daszak spent so much time shutting down all evidence supporting the lab leak origin instead of warning people about the dangers of spike protein.
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Would long Covid or ME/CFS patients pay £285 ($350) to cover the cost of their own sample in a biomarker study?. We will be able to receive our results which will be explained . The biomarker has very high performance at small scale. It should only get stronger with more samples.
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If this did work it could be a really important treatment breakthrough, especially if the autoantibody data is real. It would suggest that vagus nerve stimulation is impacting potential underling mechanisms driving POTS, not just the symptoms.
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More people improving from #thenicotinetest . The patient led data is still showing a rough trend of:. 10% getting worse .35% no effect .40% improved.15% improves a lot. I would say 6+ weeks in I have improved maybe 10% overall. I look so much healthier, can walk a little more.
Just a few of the wins this week with #TheNicotinePatch.It may take a few rounds. But most are seeing benefits 😀. #Success.#LongCovid #MECFS.
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@LondonRealTV Honestly having seen this ad I am going to make sure to register and vote to vote against you, and most likely for Khan. You give off a hugely worrying vibe.
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After I knew it had happened I started:. Mega dosing fish oils .Mega dosing anti oxidants and vitamins.Held ice on my head for 10 mins and behind at the top of the spine . Lions Mane from today. Rest. I’ve cancelled all meetings until tomorrow.
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Two key markers from @BhupeshPrusty’s work:. Fibronectin .Natural IgM . And let’s start figuring out how to boos IgM.
Regarding the biomarker testing: Fibronectin is apparently commercially available. Natural IGM measurement was based on an ELISA assay that Prusty and his team created. They've decided not to patent it so that it can be used at low cost by labs who choose to do so.
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Although the data is not presented, they also report observing a reduction in anti-autonomic autoantibodies α1-AR and β1-AR
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UPDATE: We have now ordered all 30 ELISAs and are coordinating blood delivery from US and EU to the UK (34 patients). The response from the community was overwhelming. We filled all open places and had a waiting list of 30 in 24 hours. We are so excited to start this research.
Patient led research - 6 spaces open to test 30 blood markers at raw cost. These markers may help us classify ME/CFS / LC, testing states of important systems and giving insight into our personal disease manifestations. Some have never been tested in ME/CFS or LC. @amaticahealth
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Best ways to clear spike protein. A friend just asked me what the best ways to clear spike protein are. I said I only knew of Nattokinase . Does anyone have any other strategies to clear spike?.
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Key new study used fluorescent labelled S1 in mice to show accumulation in CNS, heart, lung, liver, intestines, spleen and pancreas. S1 aggregated around blood vessels. It was found in the prefrontal cortex and skull marrow niche, which was also found in human autopsy samples 1/.
😮~60% of us who had COVID still might have lingering viral spikes in our heads! Our new study reveals SARS-CoV-2 spike accumulation in the skull-meninges-brain axis & its implications in long COVID. By @zhouyi_rong @HongchengM @Sakethkapoor🔬🧠🦠🧵👇
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Cognitive slowing after COVID infection in both people w/ and w/o Long COVID. UK and GER study shows that people w/ LC (PCC) have dramatic cognitive slowing. What blew me away is that people w/o LC are also affected, 55% increase overall impaired, 385% increase severe impairment
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Everyone this study is an at home saliva sample test that can be posted back. It would be great to spread the word and join. ME/CFS research rarely gets funded so we have the chance to push this forward and accelerate it together.
Recruitment of people with #LongCovid (in the UK) for the @DecodeMEstudy remains low. 5000 Long Covid DNA samples could be analysed. If you have any reach within the UK Long Covid community, please spread the word!.
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@hellozeik @ahandvanish I read recently that there is an immune component in at least a subset of ADHD patients
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This morning I’m encouraged by how much better I feel. My short term memory was completely gone last night. Was very worrying . But I feel like these supportive treatments have already made a difference. I took CBD last night and on Friday I will do Glutathione and Curcumin IV.
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If it's real it is fascinating data. I imagine that in the trial the protocol was very precisely controlled, and not a lot of information about the protocol was given. So we cannot know if trying this with home devices would work.
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@dr_musgrave Tragic this. When I think of all the patients being psychologised, gaslit, ignored, left adrift and not allowed access to the treatments that can at least improve quality of life. I would normally say nothing but I see patients suffering in ways that I cannot, personally, ignore.
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@NataliaHodgins @remissionbiome As others said I think patient led research us so critical because of the lack of urgency and mobilisation of resources from the traditional research channels. I believe in the next years we will see patient led research leading and pioneering in the space.
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And Peter Daszak even talked candidly about engineering coronaviruses (“recombinant viruses”), testing them in “humanised mice” (expressing human ACE2 in their airways), and that some “don’t respond to MAbs, 💉”
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@ecomarxi @DavidGHFrost @Telegraph Let’s also remember it is the “Israel-backed Hamas”. Likud funded them. For me they should be referred to as Israel-backed Hamas every time they are mentioned, as with US-backed Israel etc etc.
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@ahandvanish It’s so interesting but it leaves me with so many questions. Persistent replicating virus? Could it replicate in vitro? Viral components could activate chronic inflammatory pathways, cell danger response etc. But is the bigger problem the viral components or the T cell responses?.
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This year we will be establishing some really interesting tests, so stay tuned and I will share more:. COVID persistence RNA blood test. Immune exhaustion test (including PD-1 in T cells). miRNA ME/CFS subgroup classification test. FN1 natural IgM test. MCAS test. More to follow.
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Exposure of mice to nicotine both before and after Covid infection led to reduced SARS-CoV-2 RNA expression in brain tissue. There was no impact on overall survival or health outcomes, but nicotine did reduce neuropathologies in the mice. The mice used express human ACE2
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@RhiaRhiaRhi There are various reasons why I can’t say unfortunately, but if he comes to life and starts running marathons I and others will take any heat to make sure the information gets out there.
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@ecomarxi These are the moments you see what a sham western democracy is. Power does not represent the people.
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@BhupeshPrusty’s work showed that serum from the blood of ME/CFS patients caused mitochondria fragmentation in healthy cells. We also know ME/CFS patients have pathological levels of GPCR autoantibodies. So there are good reasons never to give blood, but yea… @me_awareness.
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Some US researchers have called into question the recent results showing reduced serotonin in Long COVID patients. They said that for their sample prep the values were too high. And more importantly, the authors had claimed SSRIs restored serotonin in mice but presented no data.
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We already saw this in the UK. All the minimising and yet healthcare decision makers know there are pathogenic components in the blood. We have all seen the data. And yet no biomarkers that would force insurance companies and healthcare systems and disability bodies to pay….
NEW: @NHSuk quietly added a new health condition ineligible to donate blood: Long Covid. I’ve reached out for comment on what led to this change and will update with response. h/t @1goodtern
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These 6 places are raw cost with the total price being £1125 (~$1442) per person. We will be sharing our results and our aim is to build the largest public database of patient data that can be used to advance research. More information on markers:.
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The study is behind a paywall so let me share the data here
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Age of onset of Mast Cell Activation Disease (MCAD, including MCAS) symptoms. People are developing the disease earlier, and rates are increasing. While this likely in at least in part relates to environmental factors, Gerhard Molderings proposes inherited epigenetic alterations
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And @BhupeshPrusty’s stunning images showing that ME/CFS patient serum can fragment mitochondria networks, even in healthy cells (bottom left image)
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@BinitaKane @Jmiku4 Some people have been investigating it, with similar problems seen in ME/CFS patients. There could be many causes but it’s interesting that the beta-2 adrenergic pathway on adipocytes regulates lipid metabolism, and many patients have β2-AR autoantibodies
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Finally I take everything for mitochondria support. NAC.Mega dose CoQ10. I may do an NAC IV as well.
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@KristinaRevay Thank you for this insight . Yes we will be taking muscle biopsies and then trying to maximise the amount of information we can extract.
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Are we going to see increased incidence of autoimmune diseases across the board? And what else? Neurodegenerative, cardiovascular, GI, metabolic disorders, even cancer? In the adult population it seems we can already say yes, but we need to be researching this in @LongCovidKids.
Ouch. Diabetes in aged 0-4 in Sweden. Steep upturn in 2020.Children are just casualties of adult decisions.
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@RenzPolster Which is why this is one of the best studies about it: . I did pathways analysis on few of the hits and linked them to other relevant systems / processes. Will do more and share some time.
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@SawyerBlatz It’s a really good question. My best guess is that it’s a combination of factors that trigger ME/CFS, which involves a combination of pathogenic mechanisms interacting. Some may take time to manifest. I was ‘ok’ for 5 months after infection. Then one HIIT workout did it.
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Any other thoughts for reducing neuroinflammation or preventing damage in the brain after PEM?. And I hope some elements of this tool kit help others.
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And what is really interesting is that the lead scientist (Xichun Yu) published a study in rabbits where they induced the rabbits to produce "acetylcholine receptor-activating autoantibodies (M2R-AAb)".
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@hellozeik @ahandvanish Absolutely. And even recently it’s becoming clear that there is at least an immune component to Alzheimer’s Disease. We are living in the middle of a silent autoimmune global public health crisis. So many people need help.
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@oliver_phil That’s insane. Thanks for bringing it to my attention. This is another aspect I’ve been worrying about.
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They summarise in that rabbit study that LLTS "treatment suppressed the postural tachycardia, improved the sympathovagal balance with increased acetylcholine secretion, reduced the levels of inflammatory cytokines, and reversed the attenuated heart rate".
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@yulingchow I know. I hope this is going to change things. And I think good companies will play a crucial role in accelerating things . It’s staggering to me that this didn’t happen 3 years ago.
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@jason_isaia @amaticahealth We are testing mostly very severe bed bound patients. We've been working for months to organise blood draws and to ensure the samples will be as consistent as possible. In the UK we have mobile phlebotomy partners. Other countries we have successfully worked through case by case.
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I also had protein last night to flood my body with resources and ate a lot . I also doubled my dose of all mast cell stabilisers. I forgot to put on nicotine last night but I’m about to put on a 21mg patch. And I took 10mg of Valium for its last cell stabilising properties.
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@drclairetaylor @JohnSnowProject I also always follow this reinfection data. I think clearly we will have a secondary autoimmune crisis, heart disease crisis we are in the middle of. But I would like to see “ME/CFS-like manifestation” added to this, to see the hazard ratio after consecutive infections.
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This thread shows just how many LC bio signatures there are. Combining 2-4 markers could give better diagnostic performance than many diseases . I have been trying to collaborate with a team from Melbourne who have a biomarker study ready to go but no UK MD has been interested.
COVID : BIOMARKERS. thread. 1. IMMUNOLOGICAL FACTORS (94% accuracy).
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Please DM me if you are interested. We can help to send blood from anywhere in the world. The first 6 to confirm will get the full panel of 30 tests at raw cost. Others who are interested can join a waiting list and we'll give discounts to those who express their interest now.
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People with Long Covid on average have high T cells that spontaneously produce high amounts of IFNG, which is dependent on contact with (and antigen presentation by) monocytes
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I just wonder if everyone thought it was rare but what we didn’t realise was that everyone knew someone with an ambiguous chronic disease that ruined their life. Then with the medical gaslighting, minimising and the fact ME patients look fine. Has this really slipped past us?
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@ahandvanish Or host responses generally. Many people feel that ME/CFS may be a combination of mechanisms, potentially feeding into each other, and potentially with a chronic trigger. I’m trying to make sense of the minority of patients who respond to some treatments with step changes.
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I wonder if it’s been partly a perfect storm of patients looking ok, doctors’ tendency to minimise everything, normal blood work, no easy to identify individual problem, and no response to most treatments. But I also wonder if insurance companies have played their part.
. @EricTopol, I believe the new CDC ME/CFS numbers could be significant enough to merit a tweet from you. An unbelievable 1.3% of adults in the United States have #MECFS. Thank you for considering this!
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@RealAnitaWhite This should be looked at in kids 100%. I’m going to try and establish a viral RNA blood test in the UK but can accept samples from anywhere. It’s something we should all have access to and I have been designing experiments like that all my career.
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