About the author

MouseDoctor

142 comments

  • This is a timely q and a mouse. If you have a second covid vaccine tomorrow but have been struck down with a cold for 5 days that still hasn’t cleared, would it be wise to postpone on the basis that the immune system is already dealing with enough?

    • I’m not a doctor so can’t give advice….As long as your cold is not COVID-19 not sure why delays are needed.

        • The UK govenrment want to get people who work with animals to report their work. As you have nutters that go bombing people who have abortions in the US, in the UK in the 70s-90s those nutter bunny-lovers would go round bombing people who work on animals. I personally know of people who had to have their cars checked every day to look for bombs and then there were other people who worked with guinea pigs who’s neighbors and bank managers were bombarded by the anti-vivs (vivisectionists) saying that they were paedos. The Halls (Guinea pig sellers) had the bodies of their dead relatives stolen. Then there were people who were actually letter-bombed. Whilst I can deal with this, it is not fair to expose your family to nutters and as somenoe who has been “stalked” by a nutter (yep that is another story) it is not good.

          So you ask why put your head above the parapet to get it shot off. If you worked on monkeys and cats/dogs/(rabbits) you could easily be on a death/hit list in the 1970s and 1980s. Mice are less emotive. In the noughties the UK government went after the funds of the few mititant anti-viv nutters, to encourage scientitst to talk. But why do it?

          So the blog was an oppertunity to talk about animal experiments and do what the government wanted. It is part of MS research So why not do it?..Easy why expose yourself? However, as I have cured more mice than people….why not be called a Mouse Doctor. I could design a range of merch…I have a line of T-shirts and have an alter ego. The funny one? However, it is “cure of the week” to report on animal stuff.

          Most people are too lazy to work out who you are and who knows more than one person could be a cyborg collective. As an alter ego the Mouse Doctor could say things that may not be normally said. We could talk about animal experiments in an open way. Yes they do have their part to play but likewise we should not be afraid to question stuff either. Perhaps it is harder to attack a Mouse than it is a person. Over the years we have had a far amount of horror-shows reported on the blog. So as Scientist follow their altmetrics to see the blog post “glowing about their work” but they find the constructive critique that says it is all pants.

          But yes I am a mouse EEk!

          • Do you think there will come a time when no animals will need to be used in labs? I personally hope so.

          • That made me laugh! I’ve managed a couple of pre-clinical tox studies in a former life. None of the facility addresses are listed on the internet for the reasons you mention above. I actually thought one place was a brother when I turned up to inspect. Drab red awning, single number on the front door, no signage. The only tell is the mountains of ducting hanging off the side of the building (to control air flow). Animal rights people would have a field day if they knew what was inside.

        • Do you think there will come a time when no animals will need to be used in labs? I personally hope so.

          In the UK this is more likely to happen…we have only done EAE experiment in 3 years

          • ***brothel…..

            Says a lot about the average Australian brothel when they could be mistaken for an animal testing facility.

    • I am a Pharmacist, wait until you are over the cold is one of my basic rules, why throw a curve ball at your immune system. I inform patients to wait until no apparent infections or under the weather, best to be cautious vs not. Waiting 7 to 14 days will not be a detriment.

  • Hi MD, this question is irrelevant to MS.
    My wife received her MS diagnosis last year. It was a difficult time for both of us, and it is the slowly learning about the disease with the MS blog helped me going thru the most difficult times. I cannot express my gratitude enough for what you guys are doing here for pwMS and their close relatives. Please let me know as soon as the donation link is fixed.

    And my question is – I kind of get Prof G’s motivation doing the blog posts, what about you MD, Ide, NDG, and MD2? If it is ok to share your thoughts.

    • I tend to stay clear of thinking in public it only gets me into trouble:-)

      ProfG started the Blog so that he did not have to give the information once and it would also put us in the Social Media space so we can counter mad ideas before they take hold. We were slow off the mark with CCSVI and spent years fire fighting…I started making jokes about faecal transplants as soon as I heard the word microbiome, as this had the same M.O. for any FAD..a little bit of science, a way to do something outside the control of a neuro, social media and the establishment conspiracy theory. ProfG wanted us to contribute to the blog and so we did some social media training.
      But ProfG had haemorroids at the time and he was putting his experience on the blog (yep too much information. Who would use the anal plexus to discuss the existence of God) anyway it got us reading the blog. ProfG went on holiday and asked us to do it whilst he was away and a few weeks before he upped it to two posts a day. So I created the persona/alter ego and that was many years ago, I guess I have that addictive personality and if it is worth doing, it is worth doing. I fill in the space and keep things going when the Neuros are away. Likewise, I can counter some of their more bonkers ideas with education. We don’t agree on everything.

      I can say the stuff the neuros can’t say, and there is stuff on the blog that no-one knows about except me. Little in-jokes that only I or I and MD2 understand….We haven’t had too much trolling recently, but I would hunt then down/wind them up. A picture of a house….maybe says I know where you live:-). Some of the trolls have tried to get us in to serious do-do’s with our bosses (yep the GMC:). Sometimes I have dumped us in the SH1 when I say something that upsets someone with a lawyer….This has normally happened when I am struggling for content. Then blog the closes or has to change whilst we sort out things. MD2 didn’t want to post but would do comments and now does this for fun.

      However, at times it has been incredibly time-consuming and now that more people are posting it takes the pressure off. I focus on posts that I have something to say and interests me or may be of general interest or research that you spot. I am the Chinese water torture so I can drip, drip drip, ideas and also create the the background information needed to understand some of my/our posts/our research.

      NDG has done the regular tuesday spot to try and reduce the pressure on us and I know the tuesday slot will always be filled. As she is dependable…ProfG is too in the unpredictablity. Ide has has been doing the posts based on Journal clubs she has been doing. She has been stuck in Belgium for a lot of Lockdown. With telemedicine you don’t need to be in London. Maybe eventually Pharma, Neuros get it.

      However, since the last blog trauma, I have taken a step away to claw some me-time back. I am trying not posting on stuff that winds-me up, so the microbiome and MRI are off my agenda. If you want to throw your cash away on a faecal transplant, who am I to say how you want to be pampered. As for the imagers I best not go there:-), but come back in ten years and we will still be doing trials using brain atrophy as the main outcome measure..

      • We love you MD. warts an’ all. What we really respect, and want, is your honest opinion.

      • I don’t think ProfG approves of you sharing his case of hemorroids. Also, I didn’t think that post was that controversial, can’t imagine someone would send a lawyer. You’d think if someone was pissed at the post they’d do something a bit more productive like donating to MS research or something.

        • He may not approve but he has a thick skin…..but it was not me that shared the grape-story….ProfG is not that bashful as he did tweet his meat and two veg:-), another meaning for sof tissue:-). As for sending in the lawyers …yep imagine….the threat happened.

        • A while back there was documentary called don’t f*ck with cat people – hunting a internet killer. Basically this psyco filmed himself suffocating a kitten to death and streamed it live. Needless tonsay his last Subject was a human being he killed on live stream. The cat lovers were so outraged and got together and used the clues to identify him and get him arrested before he killed anything else. The point I’m making. Whatever you feel strongly about, shouldn’t lead to the same crime you are raging about. By taking a human life to save a lab rat does not balance the equation. Governments are elected by the people, use your vote change things! . Lastly MD, agree with all your points , and a true people’s champ!

  • I’m on Tecfidera. My lymphocytes have always been below the reference value (but quite variable – as high as 1.1 and as low as 0.5). 2-3 weeks after my second Pfizer dose my lymphocytes were at 1.2 – could this have been due to the vaccine? I hadn’t missed any doses of Tec.

    • Yes…..I was looking through the effects of alemtuzumab dosing from trial data and sometimes you saw the lymphocytes jump up and I would put money on it that this was infection related. With vaccine you are boosting the production of your whit blood cells

  • although i know the mechanism between parkinsons and ms is different, has there ever been a trial of L-dopa in pwms ?

    also is there any further research planned on alpha lipoic acid and the effects it has on bvl in pwms?

      • Re: So should a trial be done in the UK?

        The logical answer would probably be No I suppose since their is another phase 2 trial of Alpha Lipoic Acid being done currently in the USA. That phase 2 trial combined with the information we have from the previous phase 2a trial of Lipoic Acid done a few years back should be enough to give us a pretty good idea if it has an impact on progressive ms.

  • Hello! 🙂

    Is there any update on this very interesting case of HIV-negative patient who switched from MS DMT’s towards antivirals and went into remission?

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6100748/pdf/nihms-984569.pdf?fbclid=IwAR2zxxp54TJHUVfMip6_W0sZ3uv_hEQG2TM1k7cYOWI-I0UJqtCxlXbZeSE

    Last update of the case was in 2017, the article was published in 2018 – there is no update since then. Maybe there is something that my eyes are missing?

    Cheers! 🙂

  • Is there any (theoretical) difference in the mode of action / effectivity agains EBV between tenofovir alafenamide (TAF) and tenofovir disoproxil fumarate (TDF) other than known differences in side effects and price?

    • Yes tenofovir disoproxil fumarate is much less potent than tenofovir alafenamide against EBV.

      Title : Tenofovir as a treatment option for multiple sclerosis

      We describe a patient with highly active MS who was infected with HIV and started HIV-treatment containing tenofovir alafenamide (TAF), a potent inhibitor of EBV lytic reactivation. Her MS was in complete remission during this treatment, and she had new radiological disease activity again after switching to tenofovir disoproxil fumarate, a HIV drug with less potent activity against EBV replication.

      Link : https://pubmed.ncbi.nlm.nih.gov/33049462/

  • Do you have an hypothesis for the abnormal CD4 CD8 ratio in pwMS? Could this be related to EBV?
    Do you have an idea on what happens with DMTs? Forgive me if I insist on this topic but it must play a role in the disease or have an explanation I can’t find. Thank you

    • Do you have an hypothesis for the abnormal CD4 CD8 ratio in pwMS?: No hypothesis…. a balance between whats in the blood and what is attracted to the brain. I have not really much though into it and I prefer to work in absolute numers and not rations…..Could this be related to EBV?…If this were the case would there be anything out of the ordinary as most people infected with EBV.

      What happens with DMTS…It depends on the DMT… Forgive me if I insist on topic it must have an explanation…If one goes up the other goes down why do they go up or down? Sad to sat total CD4 and CD8 is too crude a measure just like looking at CD19 for B cells

  • Thoughts on CBD (not THC)?
    1) No chance in hell it is neuroprotective.
    2) Probably not neuroprotective.
    3) No clue.
    4) Might be neuroprotective
    5) I would be really surprised if it wasn’t slightly neuroprotective.

    • CBD apparently downregulates NGF so can it really be all that neuroprotective? THC on the other hand probably is, there was a phase three trial of a THC product which only failed because the placebo group didn’t progress, mousedoctor has posted about it before.

  • Have you and the team considered writing a textbook to document your current understanding of MS? The last textbook I found of any substance was McAlpine’s Multiple Sclerosis 4th Edition which is now rather outdated.

    • In the same vein to this, the Wikipedia article has been noted as an outdated page with high traffic. Could be a great initiative to update the public and create a stronger push towards MS research. Wouldn’t be surprised if doctors use the existing page as reference.

    • We (royal we) have written a text book Dobson and Giovannoni….. McAlpine is the bible of MS Neurology, but a text book is not worth the effort as it is outdated before it is published. I certainly dont have the will.

  • Your thoughts/observations regarding potential research with mRNA and possible cure/in remission for MS while leaving rest of immune system in tact. Thanks for yours thoughts.

    • We (royal we) have written a text book Dobson and Giovannoni….. McAlpine is the bible of MS Neurology, but a text book is not worth the effort as it is outdated before it is published. I certainly dont have the will.

  • MD (aka Dr Moneybags):

    You’ve kept this quiet:

    https://c.newsnow.co.uk/A/1081835683?-15041:5603

    All that money should get Mrs Mouse the conservatory she wanted, keep a few more British pubs alive and top up Prof G’s retirement collection.

    I suppose the remainder will go on this special brew you’ve come up with (reminds me of scene one of McBeth) to save nerve cells. Is it all mouse stuff at this stage or is there a plan to test us humans?

    Good luck. Let’s nail this one and get a winner on your CV.

    • Looks like in addition to funding MD they are funding more research into pioglitazone. Someone at the UK MS society clearly has a clue.

    • Thanks SID.
      I have plenty of winners on my CV already:-)….but as for money bags…..I don’t think we get a door let alone a conservatory

  • Hi, since last summer I am suffering from a hellish spasticity in my legs at night. No way to sleep. Beside that there is no handicap so far. The usual drugs and THC did not work so I started to take Ativan. Same dosage more or less since then, before going to sleep. It’s working very well. Although prescribing me the drug my Neuro is worried. What do you think about the long-term effect? And, is there any alternative? Do you think a RLS drug is worth to give a try? Thanks.

    • Ativan benzodiazepine medication is a GABA A recptor agonist to it causes chloride ions to enter the cell to stop excitaility..You know the issues with benzodiazepine and long term use. RLS restless leg syndrome?

      • Yes, restless legs syndrome. I heard that restless legs are not uncommon in pwMS but is often underdiagnosesd. A few weeks ago I tried Pramipexole. No cramps that night but it caused very low blood pressure and nauseau for hours. Thanks.

  • For those on anti Cd 20 what are recommendations to prevent isolation and ensure improved social capital?
    -switch treatments, even if all measure show current treatment is working well?
    – Thoughts on a j and j “booster” for those on anti cd 20 who received Pfizer or moderna?
    -other suggestions ?

      • We know it isn’t your job, doc. However, we are desperate for an answer on this issue. I trust you realize that. Please know that I am not trying to be rude. Your and your colleagues’ contribution to this site is so very much appreciated.

          • well i look forward to the time that we can get some guidance on the issue. but, as usual, hurry up and wait, i.e. don’t hold your breath. People wMS are regrettably used to it. as an aside, is there not any data on breakthrough rates for those that are both fully vaccinated and on anti-cd20 meds such as ocrevus? one would think this data should be available by now.

  • I’m guessing the octopus trial in progressive MS is going to test ALA.

    If ALA is found to be neuroprotective in the trail and mirror other smaller studies, such as brain atrophy rate reduction etc.

    The question is, if found to be neuroprotective. Will patients be given it a pharmaceutical grade from health care providers. Or will it be developed by drug companies, where they develop a similar molecule and sell it to us? As they cannot patent the natural products.

    Surely we won’t have to wait until years after the trial to receive treatments that may be immediately available

    • We have to wait for more details on octupus to be developed…will it hav 8 arms?….hopefully not loads of suckers:-)

      • Very good question…what happens next…if octupus is a Phase II (then it may be a surrogate outcome) then a Phase III with a clinical outcome will be needed. However, we have asked this question over and over again…ProfK and I met with the the inventor of the trial design and they thought people would just use it….If there are no pharma alternatives maybe but with a pharma drugs around. It is the fundementally important question before you start and that is what next? The UK Government will not licence a drug

        • It would be nice to know, that if the already licensed drugs work such as metformin or natural compounds such as ALA as-well as others, work in the trail and are shown to be effective.

          That they can be given to patients fairly quickly and help in the mostly unmet need for MS patients, to slow down progression in some way.

          I just hope compounds that are found to be effective are given out ASAP and it’s not a drawn out process.

  • What are the implications of switching from ocrelizumab to alemtuzumab after a couple of rounds of treatment. Could there be a potential advantage in avoiding the overshoot of b-cells that lead to secondary auto-immunity on the basis that they will will be zero (or close to it) at the time of treatment?

  • Question on BTKi/CD20/EBV,

    So CD20 wipes out CD20 expressing B-cells with EBV in them, BTKi inhibits B-cells but do not kill the B-cells so I assume still happy days for the EBVs lives in B-cells? Yet we hear BTKis are promising for the progressive disease and Roche even used OCR as placebo for Fenebrutinib PP experiment.

    So EBV wouldn’t have much to do with the progressive disease once MS is developed? Or the benefit of treating B cells in the CNS is the missing key?

    Of course this is assuming BTKi shows significant efficacy over OCR for the progressive disease.

  • Any news on the T-cell response to Covid vaccines in MS patients on Ocrelizumab? Is such response officially or unofficially confirmed? Thanks

  • In addition to MS progression I seem to have developed Raynaud’s Syndrome. I have a prescription for Nifedipine to treat the Raynaud’s. The Nifedipine vastly improves my energy levels and walking ability. Its better than Dalframpidine. Why?

      • But why did they mention your name ?

        David Baker – Queen Mary University of London (UK)

        A novel route to neuronal and oligodendrocyte protection via targeting of anandamide-sensitive, potassium channels

        • ProfB applied for a grant about a year ago and funding was provisionally offered last week, so this is why they did a press release. We have found a target for neuroprotection. Hope we can do it, it is not straight forward due to COVID

  • Do you have an hypothesis for ALA mouse of action? Is it because it is an antioxidant? If so, would it make sense to add vit C to spare alpha lipid acid from oxidation and let it get to the brain? Thank you

    • Remember Ala can be pro and anti oxidant

      It depend on the dose and type of tissue

      Also AlA MoA is not direct scavenging of free radical in the cell but enhance stimulation of the cell intrinsic properties of clearing damaging toxic products

      Pharmacodynamics
      The mechanism and action of lipoic acid when supplied externally to an organism is controversial. Lipoic acid in a cell seems primarily to induce the oxidative stress response rather than directly scavenge free radicals. This effect is specific for RLA.[4] Despite the strongly reducing milieu, LA has been detected intracellularly in both oxidized and reduced forms.[36] LA is able to scavenge reactive oxygen and reactive nitrogen species in a biochemical assay due to long incubation times, but there is little evidence this occurs within a cell or that radical scavenging contributes to the primary mechanisms of action of LA

      https://en.wikipedia.org/wiki/Lipoic_acid

  • In response to a comment…Who moderates the comments…..a collective and could be a number of people.
    However, so we are clear it is not easy to see the context of the comments because one does not know what the replies are to as you do not see the thread. Also word press does not always put the replies under the question.
    However I have removed the two offending comments so please kiss and make up.

  • MD, can mice smell they are related to another mouse and so do not mate with them? I’ve read this but also read that mice don’t care and will mate with their parents, children, brothers and sisters. Which one is correct?

    If mice can smell they are related to another mouse, I find this really interesting… I know this isn’t directly MS related but I wonder about human smell detection and what humans can and can’t smell. And if some humans can smell an MS signature smell on other humans.

    • Yes they stink…I suspect it is because they pee all the time. I am sure they can smell but I know nothing about it. However they will mate with their paernts and their brothers and sisters. This is the basis of inbreeding and most lab mice are inbred. I suspect they can talk to each other in mouse language…Remember you have disease dogs. You have covid dogs

  • There is a compassionate use program through Regeneron for prophylactic monoclonal antibodies for COVID-19. It is for high risk/immunosuppressed people who are likely to be exposed to COVID-19 due to their living/work/etc. situation, but have not been able to mount a response to the vaccine or can’t take it. It sounds like the patient would get dosing of the monoclonal antibodies to help ward off COVID-19 infection or at least reduce its severity, as an alternate way to have some protection despite not being able to get it from a vaccine.
    Do you have any thoughts on, or knowledge of, someone on an anti-CD20 like Ocrevus who is at high risk of exposure getting monoclonal antibodies prophylactically? Even though it sounds like a good idea in theory and the known/theoretical risks of the treatment seem to be quite low, I haven’t found anyone in a similar situation who has pursued it.

    • In the UK this is being trialled in immunosupressed people (it will be mainly cancer) and non-immunosupressed people, this is called stormchaser…It seems like a reasonable approve. The monoclonal antibody trials in COVID-19 have been uninspiring, largely because I think they are used too late. They should have trialed it in health care workers to stop them getting COVID

  • MD,
    Regeneron has studied a monoclonal antibody cocktail as a prophylaxis for covid vis-a-vis household contacts and was found to be 81% effective, if I am not mistaken. Could be a lifesaving tool for those that are immune compromised due to anti-cd20 meds and poor vaccine response. Where is the pressure to get this approved?

    https://investor.regeneron.com/news-releases/news-release-details/phase-3-prevention-trial-showed-81-reduced-risk-symptomatic-sars

    • Thanks I agree COVID-19 prophylaxis is the most sensible use of these types of antibodies, the results showed 93% protection if infection was more than two weeks after injecion. However your press release is late april and the sharing had not been done so may still yet be approved, if they are not going for emergency use licence it may take longer. The Astrazeneca antibodies have been engineered to last much longer

        • AZD7442 reduced the risk of developing symptomatic COVID-19 by 33% (95% confidence interval (CI): -26, 65) compared to placebo, which was not statistically significant therefore trial failed.

          However apparently. In a pre-planned analysis of SARS-CoV-2 PCR positive (detectable virus) and PCR negative (no detectable virus) participants, AZD7442 reduced the risk of developing symptomatic COVID-19 by 73% (95% CI: 27, 90) compared with placebo, in participants who were PCR negative at time of dosing.

          In a post-hoc analysis, in participants who were PCR negative at baseline, AZD7442 reduced the risk of developing symptomatic COVID-19 by 92% (95% CI: 32, 99) versus placebo more than seven days following dosing, and by 51% (95% CI: -71, 86) up to seven days following dosing….This suggests that it is protective and so may be useful in immunosuppressed people

  • A question on sizomus trial. People with RRMS must be on a therapy if enrolled. Some therapies are known to impact OCB (cladribine and natalizumab and maybe also ocrelizumab), how will you be able to say we got rid of OCB thanks to ixazomib while people on DMTs could get this result with their treatment?

    • Should be better in a day or two…Speaking from experience the trick is not to touch the arm and then it won’t hurt

      • Roger

        Just a while back got a bit flu like symptoms

        Blood pressure 10 7

        Most of the time 12 9

        Feeling better now

        Arm still hurt but also better

        Thanks for reply

  • In the ofatumumab trial data, nfl are lower in ofatumumab than in teriflunomide but loss of brain volume is comparable… why? If nfl represent loss of brain then the nfl level should be similar to teriflunomide. Why is this happening?

    • Good question..the simple answer is that neurofilament is measuring inflammation induced nerve damage. Ofatumumab is a better anti-inflammatory than teriflunomide and so it reduced neurofilament alot. For example natalizumab reduced the neurofilament done to 95-97% to near normal aging levels. The smouldering MS that may relate to bran atrophy is therefore on about 3-5% of the signal

      • If a person’s NFL is low does that mean that their treatment has worked? And if if for example hands continue to deteriorate is that smoldering? I.e. does smouldering not affect the NFL? Sorry if these are obvious question

        • NFL is really an inflammatory biomarker and so it measures anti-inflammatory DMT activity. Unfortunately, the neurodegeneration associated with smouldering MS is too slow to affect CSF and/or blood levels significantly. This is to me is a great disappointment.

          • Prof G,

            If NFL is really an inflammatory biomarker, what can be used to measure the success (or not) of treatments to address smouldering MS / neurodegeneration eg on trials such as Sizomus?

            At my annual appointment last week with my MS neuro, I mentioned smouldering MS and he said that he didn’t agree with the idea of smouldering MS. That was the end of that discussion as tome was pressing. Are there other theories for the cause of neurodegeneration not caused by relapses (PIRA)?

          • Thanks for your reply ProfG. So brain loss is not due to focal activity despite nfl being significantly higher in people untreated and on low efficacy DMTs? It seems a bit counterintuitive because high nfl to me means high brain loss. Then why teriflunomide, despite high nfl, is capable too slow the process to such extent?
            As possible explanation I was thinking that focal inflammation produces big chunks of nerves (nfl) and smouldering produces smaller bits that are missed by analyses (like a pepper grinding machine).

          • So how can we prove that smouldering is happening and how would you treat that in an ideal world? My neurologist will not be drawn on the subject of smouldering but he also doesn’t believe in therapeutic lag. I had my NFL levels taken and they are very low but the fact that I am getting worse must prove something is going on beyond what the eyes can see. I had Alemtuzumab which perhaps sorted the inflammation out but it hasn’t sorted smouldering

  • Vaccines – Hi MD, I took my first HPV vaccine 6 month ago and is due for the second shot, however my covid vaccine appointment is due in 10 days and I would be asked to delay the vaccination if I take any other vaccine within the 14 days prior.

    My current plan is to take the two covid shots, and wait for 14 days after the second shot for the HPV shot again – would this be safe or I should wait longer..

  • Hey MD – I see below that when asked about the motivations for the blog, you note that part of its original purpose was to offer a space where those in the proper know could “…counter mad ideas before they take hold.”. Well, I’ve just come across another load of baloney site that has its own angle on “Diet & MS” – this one is based around MS being caused by worms and parasites and fungus.

    Is there no end to the multiple permutations that crackpots can come up with to earn a buck by preying on vulnerable people with pseudo-science and outright bullshit. At least there’s a slight variation on the usual theme – this peddler of nonsense is from Canada instead of the USofA! True to form though, the disseminator of such garbage does have MS and has gone on the usual long personal journey of research and discovery to arrive at the “truth” about MS and now needs to share this “truth” with us all – at a small cost of course……… (Do I need to mention that the site is full of the usual disclaimers so it’s all advice with no responsibility accepted – “take my advice to fix your MS but if you die it’s not my fault”).

    Here’s a few choice samples of what reader can expect to find on the [edited ************…no publicity, no blame] website……..”My perspective is unique in that I have truly walked the walk with disease and have overcome it for 28 years, and I have helped many others do the same. I have an extensive background in science and nutrition.”

    “…has helped hundreds of Wellness Champions in over 10 countries take charge of their health and experience profound improvements in their life.”

    “In coaching hundreds of students in their recovery of multiple sclerosis… it has become evident that people who suffer with MS are loaded with parasites, fungal overgrowth and bacterial infections. When these infections are treated effectively, the disease goes into remission…..”

    “Multiple sclerosis is caused by an infestation of parasites, fungus and bacterial infections in the body. This invasion causes significant inflammation and immune dysfunction.”

    “When the infections that cause the neurological symptoms associated with MS are treated effectively, the disease process will stop and the MS sufferer will experience a lot of recovery, possibly even full recovery.”

    Entirely predictably the special diet includes the usual flavours of the decade such as being “…grain free, dairy free, and does not allow processed carbs, sugar or other sweeteners…”, and there are testimonials from people who are now off all MS drugs, up and out of their wheelchairs and walking. There’s also a bit of 5G conspiracy theory stuff lurking in a couple of corners of the site as well, plus the usual heavy metal and mould toxicity theories that are so beloved by alternatives as being implicated in every affliction that bothers you, and I suspect that candida is lurking around as well as under the guise of being one of the “infections” which has caused an individual’s MS. Well, I suppose if you’re going to go down this sort of pathway, you may as well include every alternative thing you can think of in order to appeal to as many people as possible – a sort of shotgun approach to suck in the punters and part them from their money.

    So, as usual, I’m left shaking my head in despair and I hope that the funny thumping sounds I think I can hear might be the sound of others also banging their heads against the nearest wall in sheer frustration at the gullibility of desperate people who believe this garbage and the sheer arrogance of those people who take advantage of them, while hiding behind a front of sharing their hard-won secrets so that PwMS can be “healed”. There are certainly many more charlatans in the world of MS than just the Medical Medium and his celery juice and EBV theories.
    Aaaaarrrrgggghhhhhhhhhhh………….

    • The crack pot and cynical ideas usually have a deposit for your hard earned pennies to go into someone’s pocket….at that point think….”It is rubbish throw it in the bin”…yet we don’t because we are desparate….In the new order of cupapability I am weary of saying this is crap…even if it is, but the best way is to walk through the science and dismantle it bit by bit….Mushrooms…well we know mushroom food is BS so there is a clue. But some of the MS drugs came from mushrooms originally….But that is sort of a one we have had before.

      https://multiple-sclerosis-research.org/2012/04/mushroom-model-dont-believe-every-thing-you-read/

      If you are old enough to remember the X-Files we had a saying in the lab of “Doing a Scully”….Say something complicated like you know what you are talking about but if you know what they are talking about, they are talking rubbish.

      https://multiple-sclerosis-research.org/2011/12/internet-treatments-doing-a-scully/

      Worms and Parasites…been there, done that!. After some one fell into an Amazonian cesspit and their MS was cured we have had scientists telling us about the hygiene hypothesis. It may have some milege…but maybe rather than vaccinating against EBV, we just need to infect people with it at an early age? However, the rouge just stretches the idea abit further to get some cash. We have been infecting people with worms and I guess they have been putting worm eggs back into environment following their daily flush. Maybe in the off chance it may infect your dog (Toxoplasma) of pot-bellied pig (Whip worms).

      However, the problem is Neuros foster these mad ideas. There were quite a few groups infecting people with worms to stop MS…did it work….well no, because the basic idea (Th1 to Th2 switch) was built on quicksand…..but we are all changing our microbiome and some charlatans are charging people thousands so they can eat other peoples SH1… If we want to eat SH1 there are plenty of greasy spoons we could try, it’s alot cheaper…Yep only joking

      • Ahhh, if only a little fecal transplant or worm could cure. These type of ideas do catch my attention. Some I want to believe so much it makes me weep. The truth is out there, just don’t let emotion cloud it.

  • Dear prof G
    I understand the notion of ‘hitting MS hard from the start’, de-escalation in the choice of DMTs, etc.
    But what if you had symptoms for many years before diagnosis, and then have been on injectables and oral DMTs for some 10 years? Would you still think it commendable/necessary to switch to anti-CD20 therapy?
    If this has been discussed elsewhere in the blog, I haven’t found it.
    Thank you beforehand for any ideas on the issue!

  • If DMF, as a rule, significantly reduces memory CD8+ T cells, does it follow that it (probably) significantly reduces EBV-specific CD8+ T cells? And therefore, if persistent during let’s say a few years, can lead to reactivation of EBV?
    And what would be the consequences of this for DMF as a DMT for MS?
    If anyone has any thoughts on this…?

  • In a post in 2019, Prof G said: “Apart from cooling, we do not had a treatment for Uhthoff’s phenomenon. The drug Fampridine has been licensed to improve walking speed in MSers. Interestingly, several MSers have said to me in the past that their heat sensitivity has improved since taking Fampridine.”
    Has there been any evolution on this? E.g. more evidence that fampridine can be useful for some MSers?
    Or other drugs or supplements that seem to be working (off-label)?

  • Learning from other diseases

    Lupus its all about neutrophils net

    Casting the Net Wide: the Role of Neutrophils in Chronic Diseases

  • What is scientific rationale for France’s timing of recommended booster, a 3rd vaccine, for anticd20 immune compromised at 30days After 2nd vaccine or as soon as possible? Does their recommendation apply to all Covid vaccines? I apologize if this is discussed elsewhere on blog. Thank you.

    • As I understand it, it’s because of B-cell depletion and the possibility that patients do not develop sufficient immune response. This issue has been adressed in the blog many times, and there have been recommendations about the timing of anti cd20 therapies and timing of the covid vaccine, to minimize that problem.
      The advice now in France about a 3rd booster looks more like a general precaution, rather informed by supplementary data (but I could be wrong about that).

    • Exactly MESQ1000! It’s An observational study by Johns Hopkins of immune compromised patients who sought out a 3 shot on their own ( because the CDC doesn’t have the ——- to give any guidance to immune compromised, not even using observed known responses to other vaccines.) FYI, If you understand French, the French decision that immune compromised, including those on, anticd20 therapy, should get third shot at 30 days after last vaccine is linked in NPR article posted by MESQ1000 above. Allez savoir pourquoi.

    • On that note: some neurologists are now testing anti-body response in MS-patients on DMTs, (e.g. prior to dovid-vaccination, 2 months after first shot, and 6 months after first shot).
      Is this something Barts team considers to be useful?

  • Is Rituximab used for MS in Germany?

    This is the situation
    -Going to Germany later this year for a two-year Master’s degree

    -Have been on rituximab for almost 10 years
    -Taking infusions on an ‘as needed’ basis now
    -Currently “NEDA” (or “NEIDA”), approx. 20 months since the last infusion

    Does anybody know –
    1) Will it be possible to get rituximab treatment in Germany? (in case it is required)
    2) Will standard statutory health insurance cover the cost of treatment?

  • Is Rituximab used for MS in Germany?

    This is the situation
    -Going to Germany later this year for a two-year Master’s degree
    -Have been on rituximab for almost 10 years
    -Taking infusions on an ‘as needed’ basis now
    -Currently “NEDA” (or “NEIDA”), approx. 20 months since the last infusion

    Does anybody know –
    1) Will it be possible to get rituximab treatment in Germany? (in case it is required)
    2) Will standard statutory health insurance cover the cost of treatment?

  • Thanks so much for keeping your blog up. I’ve been reading and commenting some for a year or two. I really wish that I could be a patient of one of the doctors here.
    Anyway, I’d really appreciate knowing what the experts here think about the information in this article/book https://www.nytimes.com/2019/05/13/books/review/bottle-of-lies-katherine-eban.html

    I picked up a refill for baclofen, a med that I’ve taken for years to treat MS spasticity. The tablets were a different shape than the ones I’ve taken before, but I didn’t think much of it. After I’d taken them for a few days, I knew that they weren’t working very well. I was trying to find out why, and found that article.

Translate

Categories

Recent Posts

Recent Comments

Archives