Dr Markov CBIS Theory of ME/CFS - General Discussion

[Hip]

Is this just the cost of the vaccines for the first 6 months? Or is this for the full treatment of 2-3 years?

Just the first 6 month unfortunately. Though Dr Markov says you should notice improvements by 6 months, so I guess you can decide at the 6 month point whether to carry on, based on whether you feel you are getting better.

 

[Garz]

for you guys that are trailing this:

I see its the most read post on the front page of the forum - by a country mile

clearly many others are following along in the hope that it works out for you - and perhaps trying to figure out if it might work for them.

what do you guys think about using some kind of simple tracker to capture progress in a way that would lend itself to a visual representation ?

nothing difficult or time consuming - maybe something like this - with only 2 data points per month
-the first being if Markov style treatment was taken that month
-the second the patients Fatigue Severity Score (FSS) for that month

(the FSS is a well recognised simple 7 question questionnaire that has shown good performance for tracking fatigue in many scientific papers - it can be done online in a minute or so - here:
https://www.mdapp.co/fatigue-severity-scale-fss-calculator-372/

the idea would be that each person / patient trailing the Markov approach would fill in 2 cells per month in an online or offline spread sheet - so you would end up with something like this
(I entered rubbish data just to illustrate)

that would then allow an aggregated chart of multiple patients over time - which would look something like this (I have just used 2 examples for simplicity)

I know there will be ins and outs - like other factors influencing each persons trajectory - but notes could be added to cells to highlight these - and it would still provide a great overview of how people are getting on.

I have checked that the sheet and chart works in google docs - so could be hosted online easily enough

real names are not needed - PR forum handles would work just fine

I know, as I am not trialling this, I have no skin in the game as such - and completely understand if its not something you want to do

I just think that at the moment is really hard to get any clear picture of what is happening with what is the most promising treatment in years - and I'm not sure it will be any clearer in 6 or 12 months time, unless there is some form of collated results and a way to visualise them - so something like this would be a great service to all those suffers who are watching on in hope as you pioneers forge ahead.

I am happy to help in any way i can

 

[MeMeMe]

yep - its been a long long journey to get a diagnosis - including negative serological test results - only to find bartonella clearly visible in my blood by conventional old fashioned Giemsa stain of blood smear - as used worldwide for malaria ( i really think our current over reliance on serology is one of the main reasons we have so much undiagnosed chronic disease )

but now that i can focus treatment on a known cause - i am moving forward slowly but surely - and in measurable objective ways
eg i managed 150 bodyweight squats without stopping and 64 press-ups on my last workout

chronic Bartonellosis is a poorly recognised emerging zoonotic disease - the medical textbooks are hopelessly out of date - and basically say Bartonellosis is just a brief self resolving febrile illness
but there are now reams of papers showing it is in fact often chronic, have a raft of symptoms, is hard to test for and often very hard to treat.
until the 1980's only 2 or 3 species were known - and one of these only present in south America
but now there are 30 or 40 species known and over half of these are confirmed to be pathogenic in humans.

i was given a diagnosis of ME/CFS by my GP's - which is basically their go to diagnosis when they don't know what the cause is - but since there is no treatment in conventional medicine - and since my partner and i got sick at the same time - i felt it was in fact an infectious disease and pressed on with my search for a proper diagnosis.

i suspect a significant proportion of other ME/CFS sufferers are also actually experiencing Bartonellosis - so i do what i can to raise awareness.

in fact there were some threads here that were polls of members symptoms - i was interested to find that when i answered the poll questions, my symptoms were a perfect match for the top 10 symptoms of the other respondents.

i was sick for 6-7 years before definitively diagnosing Bartonellosis - and i was pretty sick by that time - my approach to treatment has had to be multifaceted in order to build my health back up - layering in many approaches that strengthen my body so it can better fight the disease and tolerate further treatments. Starting with the very basic stuff that helps a persons health no matter what the cause:
-sleep
-diet
-exercise ( within a very systematic approach to avoid PEM)
-things that help rebalance the immune system
then latterly adding more antimicrobial therapies - both natural and pharma - again only at a rate that i could tolerate - as they tended to make me more sick before i got gradually better
its more of a methodology -addressing the root cause - rather than any specific single "special sauce" magic anti-microbial or antibiotic

i am pretty active on the forum here - https://www.healingwell.com/community/default.aspx?f=30

on this thread i document my blood smear results - where i was initially looking for a potential Babesia infection (similar symptoms) before finding bartonella by accident.
https://www.healingwell.com/community/default.aspx?f=30&m=4268122&p=4

Where did you get the blood smear tests done? I’ve had a few standard blood tests from my GP but they never found anything. Reading this makes me think I should try and get a stain test to see if it picks anything up. Also where did you pick up bartonella if you don’t mind me asking?

 

[Hip]

(the FSS is a well recognised simple 7 question questionnaire that has shown good performance for tracking fatigue in many scientific papers - it can be done online in a minute or so - here:
https://www.mdapp.co/fatigue-severity-scale-fss-calculator-372/

It would be a good idea to start tracking clinical responses to Dr Markov's treatment, especially if more patients started on the Markov protocol.

However, I suspect those fatigue scales are not very good at objectively tracking improvements.

This is because most people are not able to rate their fatigue level on any absolute scale; human memory of how you subjectively feel on a day does not last long. At best, you may be able to say that you feel better (or worse) today than you did yesterday, or that this week is better (or worse) than last week. That's how long subjective memory lasts. But that's only a relative assessment of fatigue, not an absolute one.

Also, if you use subjective measures (subjective = your introspective assessment of how your mind feels), this is more susceptible to the placebo effect. Placebo works on dopamine, and if you feel optimistic (because for example you are trialing a new treatment which you hope will cure your ME/CFS), you are going to generally feel better subjectively. This is why scales using objective measurements (what you are able to do, not what you feel) are more reliable than subjective scales.

Also, some ME/CFS patients do not feel fatigued (they get PEM, but do not normally feel fatigued). The ICC definition of ME/CFS does not even require fatigue as an obligatory symptom of ME/CFS

The Chalder fatigue scale used in ME/CFS has been criticised along these lines.


When I want to know how effective a treatment has been, I usually ask ME/CFS patients to rate where they stand on the the 5-point ME/CFS scale of: very severe, severe, moderate, mild, remission before and after treatment.

The levels of this scale are objective, because they relate to what you can do, not how you feel. For example, in mild ME/CFS, patients are usually able to work, either part or full time. Whereas in severe ME/CFS, they are bedbound or lying horizontally on a sofa for most of the day and night. These are objective conditions, and can be observed by others, not just the patient.

So if you are severe, and you move up on the scale to mild, which means you are capable of working, then this is an objective observation.

 

[Garz]

Where did you get the blood smear tests done? I’ve had a few standard blood tests from my GP but they never found anything. Reading this makes me think I should try and get a stain test to see if it picks anything up. Also where did you pick up bartonella if you don’t mind me asking?

I researched it, purchased a suitable microscope, stain etc and did the blood smears myself

it was a learning curve - and takes good deal of care and effort - as bartonella occurs only in occasional clumps in the peripheral blood of chronically infected persons -not evenly distributed in all slides as one might expect - ( ref latest work by Robert Mozeyani MD and professor Ed Breischwerdts) but once found its 100% conclusive as nothing else has the same presentation
i was able to find it in only 1 in 10 smears even when very sick

your doctor will have a technician look at a slide for 20minutes max - in which time they could find something if you were lucky - but they are more likely to pronounce it as just fine
it really needs 1hrs per slide and 10 slides to do it properly - and no commercial lab provides this service
(i am considering setting up a test lab that performs this type of test for this reason).
see my thread linked above for more info

as far as where or when i became infected - its very hard to say - some people get a fever right away -eg "cat scratch fever" - but many people become ill only gradually 6 months or more after the event. We had cats including taking in strays when i was a kid (a high risk factor). We had dogs also (another risk of exposure) also many insect bites, spider bites, it could come from almost anywhere, bartonella is very widespread in the wild - it has been found to infect every mammal on the planet and is usually spread to humans from animals via biting arthropods, fleas, ticks, biting flies etc etc so just about everyone is exposed. The more contact with animals the greater the risk.

 

[Garz]

@Hip

absolutely agree - i was just using the FSS as an example of a simple recognised scale that was not too great an effort for users to complete - but i completely agree that a more objective measure would be better

in fact i do exactly that to measure my own fatigue - eg measure how many tasks of 15 mins or more i can do each day - how fast my daily walk was etc - these objective measures work very well for me. but its highly individualised for me only - so i was looking for something more universal

the 5-point ME/CFS scale of: very severe, severe, moderate, mild, remission - looks good to me

 

[Lilliand]

@Hip I saw somewhere where it was mentioned, I think by you, that Dr. Markov has vaccines available with the common offending bacterial strains for CBIS. Though I cannot find where I saw that. And that those vaccines are just as effective as the personal auto vaccines are.

Would getting those vaccines be an option instead of the getting the auto vaccines during this process, and do you know what the cost is for them, compared to the auto vaccines?

And thank you for all that you do and how much you put into giving us information, I am very grateful.

 

[Hip]

@Hip I saw somewhere where it was mentioned, I think by you, that Dr. Markov has vaccines available with the common offending bacterial strains for CBIS. Though I cannot find where I saw that. And that those vaccines are just as effective as the personal auto vaccines are.

Dr Markov actually uses a combination of autovaccines prepared from the patient's own bacteria, as well as ready-made off-the-shelf vaccines that target common bacterial strains. For example, his Staphylococcus vaccine is not an autovaccine, but an off-the-shelf vaccine he developed, containing common Staphylococcus strains.

He also developed an off-the-shelf vaccine polyvalent urological vaccine targeting many of the common bacteria found in UTIs. A list of his patented vaccines is found here.


Dr Markov prescribed me an autovaccine made from the 3 bacteria isolated from my urine, as well as his Staphylococcus vaccine, and his polyvalent urological vaccine.

There is not much difference in price between the autovaccines and the off-the-shelf vaccines.


I believe Dr Markov did say that that it should be possible to create a single polyvalent vaccine that covers all bacterial species and subspecies involved in CBIS, and this would simplify patient treatment, as it would replace the autovaccines entirely. But if I remember correctly I think there were some regulatory hurdles to overcome before such a vaccine could be introduced.

 

[Garz]

OK, I changed the CFS scoring to the scale Hip suggested - and annotated the sheet accordingly for the new 1-5 scale - so the explanation of how to score is there in the sheet
Then removed the example data ready for people to enter real data

the chart will plot as before as data is added

a link to the sheet in google docs - here https://docs.google.com/spreadsheet...ouid=107444071949869960541&rtpof=true&sd=true
it should be fully editable by anyone with the link

i would urge anyone already undertaking the Markov Vaccine trial or anyone considering starting the trial to add a line to the chart and add their own data - or contact me and I will do so for them.

we can start a new thread to capture any discussions regarding tracking if needed - to avoid filling this one up too much with the specifics.

let me know if I can help in any way

 

[Atlas]

the chart will plot as before as data is added

@Garz hey, this is a cool idea. I'm happy to participate.

But as far as I know there are only 2 or 3 of us currently on the treatment..?

However if there is anyone else hiding in the woodwork hopefully this might bring them out so that we can all get a complete picture of what's happening out there. (looking at you, secret lurkers who are trialing the treatment )

I agree that a simple scale of severity is better, even though it won't be possible to see any within-level improvements... I guess people can always discuss within-level improvements here or elsewhere. If this treatment does turn out to be as effective as the case reports suggest then we should eventually be seeing full remissions from it. So if we only saw within-level improvement even for people who keep going for several cycles, I would consider the treatment a failure.


---------

In the line for "was Markov treatment used that month", perhaps there needs to be a third option or a clarification about when to put 1. Reason being that during the treatment there are scheduled breaks of 1 month within the same treatment cycle, and gap of 3 months between full treatment cycles. So someone could still be on Dr. Markov's protocol but not necessarily have taken any vaccine in a given month. So perhaps a third option e.g. "R" if the person is on a scheduled rest from vaccinations but still planning on continuing treatment?

 

[Atlas]

Someone mentioned previously that there was a Discord group that was discussing this? Is that still the case, and if so how to find it?

I'm also wondering if anyone in that group ended up deciding to trial the treatment.

 

[Hip]

I agree that a simple scale of severity is better, even though it won't be possible to see any within-level improvements... I guess people can always discuss within-level improvements here or elsewhere.

You can use the 11-point Phoenix Rising scale to get within-level changes. This scale nicely maps onto the very severe, severe, moderate, mild, remission scale. You can find the PR scale in that link. I don't know who originally created this PR scale, but in my view it is the best, easily to read as well as relate to.

The other people on the Markov protocol are myself, @Hipsman and @bensmith. We started the Markov protocol 15, 21 and 13 months ago respectively, but with interruptions due to various reasons, such as the war.

 

[Lilliand]

But as far as I know there are only 2 or 3 of us currently on the treatment..?

I'm pretty sure I'm going to try this

 

[Atlas]

You can use the 11-point Phoenix Rising scale to get within-level changes.

Yeah, that's a pretty good scale. Although, I kinda feel hesitant to call myself very severe.

I would be very severe physically on that scale, because I am bedridden except for bathroom trips. But, I can safely walk to the bathroom, a few steps across the hall, about 3 times per day, without entering a PEM downcycle (as long as I'm not already in one, in which case I use a bucket next to my bed). And I have enough energy to have a sitting shower about once every 7-10 days.

So since I can still swallow, eat, tolerate light, and manage most of my own hygiene it feels a bit weird to me to say that's very severe when looking at other very severe people who can't eat etc.

Not to mention since late last year there is somewhat of a disconnect between my physical limits and my cognitive limits (my cognitive limits are not as severe as they used to be).

 

[Atlas]

I'm pretty sure I'm going to try this

Yay! Please keep in touch if you do! I really wish we had more people willing to trial this.

 

[Lilliand]

Yay! Please keep in touch if you do! I really wish we had more people willing to trial this.

Definitely, I'll be happy to help. I should be moving forward with setting the initial email appt up this month.

 

[Garz]

In the line for "was Markov treatment used that month", perhaps there needs to be a third option or a clarification about when to put 1. Reason being that during the treatment there are scheduled breaks of 1 month within the same treatment cycle, and gap of 3 months between full treatment cycles. So someone could still be on Dr. Markov's protocol but not necessarily have taken any vaccine in a given month. So perhaps a third option e.g. "R" if the person is on a scheduled rest from vaccinations but still planning on continuing treatment?

Thanks for the input on definitions Atlas - that's an important point - i hadn't realised there were gaps

For simplicity - the way i would see it working best is that if a person is scheduled to take no vaccine that month as per the Markov protocol schedule - then i think we can consider that still actively treating and add a "1" to that months cell

if their treatment is interrupted eg by war, illness, logistics or they discontinue treatment - enter "0"

Having some other value as an indicator for the condition that treatment is not being taken - but that is a scheduled part of Markov's treatment protocol doesn't seem to add meaningful value that i can see - am i missing something - what would we do with that data ?

adding a letter would also leave a gap in the lines in the chart as excel will only plot numeric values

if we do want to capture and display the months that are on the protocol but taking a planned break - an alternative would be to use a 3 number scale for the treatment line - like
2= active treatment with vaccine that month
1= still treating but on a scheduled break
0= unplanned break from treatment due to war, illness, logistics etc - or discontinuing treatment

it adds a bit of complexity and am not sure 1 and 2 are sufficiently different to be meaningful in the grand scheme of things

I will do it any way you guys would prefer though, so just let me know

either way thanks for the help with definitions

 

[Garz]

OK. Updates as follows:

Which CFS Scale to use

the 11-point scale has a bit more resolution making it a bit easier to visualise incremental progress / changes – it also maps well onto other scales – so I think that’s a good idea - I will adjust the sheet accordingly

Date range of chart

I will make the start date earlier than the earliest participants start (thanks Hip) - and end point in approx. 2 years’ time for now - which should capture everybody and be as inclusive as possible (if anyone requires an earlier start date – or later end date - just let me know)

Names / Handles in the sheet

To remove as many barriers as possible to everyone who wishes to take part from doing so - I have taken the liberty of adding lines and usernames for all those we know are currently trialling the approach to the sheet - it’s there to use if you want to, but there is absolutely no pressure.

(It’s simply intended to be something to help the people track progress on a comparative scale and for everyone following with interest to get some kind of overview of how it’s going – but if you expressly do not wish to be included – just drop me a line and I will happily remove your username).

@Lilliand - I have added a line for you on the basis that it sounds like you are going forward

That makes 5 participants – and there are actually 6 more lines available if more participants come forward.

I have left an example line in the sheet, for now, so you can see roughly what kind of chart to expect

Dealing with Historical data

Regarding historical data - People can either add their best estimates of what score they were at in the past months – or start from this month leaving the previous months blank. I know it may not be easy to remember or guess, so I leave it entirely up to you.

Comments in the sheet

if a participant wishes to add any notes to their chart – for instance if treatment was interrupted due to logistics issues or other health issues – or any other notes you may wish - you can simply add a comment in the relevant cell of the sheet. Such comments can be used for any purpose you would individually like (eg any subjective observations for that month, noting any side effects etc etc )

To do that:

• right click on the cell for that month
• select – insert comment
• type a note (I checked that this feature in Excel - also works in google docs in the browser – so you do not need to have MS Excel to use it)

Hosting the file etc

I am happy to host the file and chart online – this will be with free access to anyone with the link to edit – I will also provide any technical support needed to anyone wishing to take part.

This is the link to the latest version https://docs.google.com/spreadsheet...ouid=107444071949869960541&rtpof=true&sd=true

I will backup periodically – but suggest others take their own backup copies to be on the safe side

Contacting me

You can message me on the forum via direct messages (just hover your mouse/pointer over my username on any of my posts and click “start conversation”) - I will check in regularly

Please let me know of any concerns of issues so I can better support

Updated Sheet:

Updated Chart:

 

[Atlas]

For simplicity - the way i would see it working best is that if a person is scheduled to take no vaccine that month as per the Markov protocol schedule - then i think we can consider that still actively treating and add a "1" to that months cell

Yeah that's probably best for simplicity's sake. The only advantage to seeing the rest breaks would be that cycles of treatment would be more apparent. A drop-down cell in the spreadsheet might simplify it for those entering, but that'd require setting up some formulas to convert the dropdowns to a number if you wanted to see it in the graph. But I think fine to leave as is for now.

By the way, on my phone at least I am unable to edit the spreadsheet you shared. Both on Google sheets and Excel. Is it supposed to be editable inline/in browser? I rarely can use my laptop because need to sit up and have bad POTS.

I suggest we move this discussion on tracking to a private conversation or to the members only forum, so it doesn't clog up this thread from discussion more immediately relevant to the theory.

In my opinion the edit link also shouldn't be public to non-members. Perhaps a view-only public link if possible. Or if not the thread can be updated every few months with the latest tracking. I don't think we can be expecting many exciting month to month full level changes anyway, considering the typical expected treatment duration and the very small number of people actively treating.

 

[Garz]

thanks again for the well thought through input Atlas

I will update the chart with your data as requested

By the way, on my phone at least I am unable to edit the spreadsheet you shared. Both on Google sheets and Excel. Is it supposed to be editable inline/in browser? I rarely can use my laptop because need to sit up and have bad POTS.

yep - that was the idea - at least for participants - so they can easily enter their own data with as little friction as possible

I suggest we move this discussion on tracking to a private conversation or to the members only forum, so it doesn't clog up this thread from discussion more immediately relevant to the theory.

yes, happy to do that - i just wanted to keep it open here for long enough to ensure we caught the attention of all the possible participants - and maybe encourage any that are trialing this, but so far not made themselves known, to come forward to take part in the communal tracking.
i will reach out to all of those we know of on the trail via the "conversation" tool

In my opinion the edit link also shouldn't be public to non-members. Perhaps a view-only public link if possible. Or if not the thread can be updated every few months with the latest tracking. I don't think we can be expecting many exciting month to month full level changes anyway, considering the typical expected treatment duration and the very small number of people actively treating.

i am not yet sure if google will allow some links to be editable and others read only for the same file
i think it will if i have email addresses for the participants to assign sharing privileges to - but maybe not everyone wants to do that / is another step hurdle to participation - so i had made it open for now
so far there is no data that can be lost or corrupted so i wasn't too concerned - but i agree - once there s data we will want to make sure its not lost or corrupted somehow with unwanted edits - will look into it

i will shortly make a new file and new link with full edit rights to share with the active participants via private conversation.

as suggested - we can then share updates in this thread every month or so via a snapshot

also - for anyone who doesn’t have the energy or capacity to do so, I am happy to edit the chart/ sheet for you – so please do not let fatigue or any unfamiliarity with MS Excel or Google docs stop you from participating - just message me with a few words about your dates and scores, by clicking on my username in any post and i will update the chart for you.

i will reach out to @Hip, @Atlas, @Lilliand, @Hipsman and @bensmith via direct message / private conversation where we can discuss any further details / ongoing tracker related issues

I think @MartinK may also be proceeding - so i will drop him a line too.

If anyone else here is undertaking the Markov Vaccine treatment and would like to participate in the Trial Tracker - please chime in here or drop me a message - we would love to include you.

(from here on i will try not to add too much more on the tracker to this thread and instead keep the ongoing discussions on a private message conversation with the participants)