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Updated CFS Roadmap

Swim15

Senior Member
Messages
369
This may get hit with some hostility but I’d like it to generate some positive discussion hopefully. I've been here a couple years and coming up on my own 5 year anniversary of health battles after being healthy my entire life.

I spent a lot of time, dozens if not hundreds of appointments, and a lot of money working through the roadmap at first after I crashed to try and figure out what was wrong.

There are a lot of things on the roadmap I ended up finding but it took multiple rounds of going back to look at the same potential diagnosis because the suggested testing wasn't the most accurate or detailed and this can be really confusing for newcomers.


I've mentioned before that I’m in medical school (barely still but trying to make it work) and I have been very blessed had an incredible amount of clinical exposure with some doctors that I became connected with who are integrative med/functional in their practice.

Through this I've gotten experience from multiple providers and have been exposed to hundreds of complex patients - MANY fitting the ME/CFS diagnosis.

I am definitely not trying to assert that my experience is above all others but after the hundreds of clinical cases I have been privy to, I truly believe that the current CFS roadmap is not the best guidance for the most common causes of CFS and it can be somewhat confusing.


In my experience when people have come in with a CFS diagnosis there’s a handful of things we have tended to find far and above anything else - these are in no specific order -

1. Mold/mycotoxin toxicity (2/3 homes in America have mold - this is incredibly common)

2. Heavy metal toxicity (typically mercury, gadolinium, or lead being the primary driver)

3. SIBO/SIFO

4. Lyme disease

5. High total toxic body burdens with sometimes dozens of environmental toxins being significantly elevated

6. CCI/AAI - this diagnosis is much more common than I initially believed if you start looking. I think a big driver of this is (1) cell phone and computer use with head forward posture, (2) automobile or sports trauma, (3) glyphosate causing damage to connective tissue.

7. Secondary adrenal insufficiency (severe) usually caused by burning the candle too hard in combo with some of the above factors usually playing a roll

Typically these are comorbid with EBV or other herpes/viral infections. Our immune systems are created to handle these infections, however, and these infections are typically well controlled once the immune system isn’t failing under other heavy toxic burdens.



If I could make any suggestions, they would be -
1. Updated roadmap with the more common causes of CFS (in my experience and from what I have learned being on private "provider only" message boards). I'd be more than happy to help.

2. Update testing for a number of conditions, namely the ones listed above. I myself would have found positive testing for several of them had I done the correct testing.

3. Update treatments. I have seen patients come from some of the more prominent practices that treat CFS where they throw antivirals at everything and no one gets better. I have seen these same patients respond to more alternative treatment modalities - some of whom where almost dead when they got to us.
  • i.e. there is little to no mention of ozone/UVBI, IV nutrients, chelation, toxin binding protocols, liver detox phase 1&2 protocols, etc while there is a lot of time spent on things that are far more removed from common medical treatment
 

Rufous McKinney

Senior Member
Messages
13,249
glyphosate causing damage to connective tissue.

the viruses themselves are capable of weakening our connective tissue, asso. Some enzyme they produce. Plus our body trying to run on protein due to problems with glycolosis.

I think glyphosate can be an complicator. How much organic food does one need to consume before glyphosate is likely not a big issue? does exposure to trace glyphosate from (say) one mistake (having an English muffin that isn't certified organic, for instance)..is that enough to set our guts off? Maybe?
 

Rufous McKinney

Senior Member
Messages
13,249
there’s a handful of things we have tended to find far and above anything else - these are in no specific order -

This list mostly would apply to me also.

With the possibility that 1) mold did not cause the problem but I did live in a moldy place for a while; 2) Lyme I seem to not have that, despite many many tick bites (which then raises the spector of "other things" could be picked up from tick bites).

The CCI I think is a huge missed issue. It also may develop over time worsening gradually. Brain stem collapses.

The main issue not on your list that I"d have to insert is Lymphatics. I've got a very screwed lymph system.

I"ve been sick since 1963.
 

Swim15

Senior Member
Messages
369
Can you clarify what you mean by CFS road map?

The CFS roadmap that was created and used by many here (I do NOT want to discount the usefulness of the information presented on it though and the work it took to create).

https://mecfsroadmap.altervista.org/

you’re also right on viruses weakening connective tissue although I don’t think this is generally too much of a problem unless the person has an underlying condition like EDS or something.

I am incredibly sorry to hear how long you’ve been ill. You have a far greater constitution than me to still be sticking around
 

Rufous McKinney

Senior Member
Messages
13,249
You have a far greater constitution than me to still be sticking around

I was mild for decades, fortunately.

Oh OK this is the roadmap @Hip prepared.

This is incredibly valuable but you're probably correct that it may need a means to be kept current with ongoing edits and versions or some other way to track: your looking at the most current Roadmap.

_____
I don’t think this is generally too much of a problem

I think its a serious aspect of why we can get so sick. I do not have EDS. Maybe I am heterozygous for something about that which might matter.
 

Hip

Senior Member
Messages
17,824
1. Updated roadmap with the more common causes of CFS (in my experience and from what I have learned being on private "provider only" message boards). I'd be more than happy to help.

Thanks very much for your suggestions, it always nice to get feedback about possible improvements and expansions.

I should start by saying that the roadmap is only intended to orient beginners to ME/CFS, new patients that might not know how to approach their ME/CFS. So it covers the major areas, like viruses, bacterial dysbiosis, mycotoxins, and some treatments like B12, LDN, etc.

But it's not really intended to be comprehensive document. I've seen some ME/CFS patients who started out reading the roadmap when they first got ME/CFS, and then branched out into their own research and treatment interests which go far beyond the roadmap, exploring their specific interests in much more depth, and following their own experimental treatment ideas.

I don't think ME/CFS patients should follow the roadmap as a bible to treating ME/CFS, it's just a document which may help provide the first stepping stone on the path to treatment, after which patients themselves may go on to greater things.



There are a lot of things on the roadmap I ended up finding but it took multiple rounds of going back to look at the same potential diagnosis because the suggested testing wasn't the most accurate or detailed and this can be really confusing for newcomers.

Any suggestions for updated or better tests gratefully received!

Of course, the sad fact is that a lot of ME/CFS patients don't find any treatment that helps them, in spite of trying dozens of treatment ideas employed by ME/CFS doctors or recommended by ME/CFS patients.

In the 12 years I've been reading this forum, the number of improvement stories I have seen is is just a handful, very little compared to the number of members on this forum (I listed them in this post).

There are no ME/CFS treatments which are guaranteed to help all patients; it's only the odd patient here and there who gets lucky and finds a treatment which helps them.

So in terms of re-prioritising the treatments in the roadmap: there might well be a better way to prioritise the tests and treatments; but at the end of the day, I don't think that will change very much, given that sadly most patients get no benefits from most treatments.



In terms of adding new treatments to the roadmap, I tried to include only treatments which are reasonably evidenced-based. That evidence could be from a published study of an ME/CFS treatment, or it could be a treatment that an ME/CFS doctor uses the treatment and reports success, or it could be because several patients on ME/CFS forums have anecdotally reported benefits from a treatment.

I don't usually include treatments where only one patient has benefitted, but it does not work for others. For example, I had substantial benefits from high dose selenium: in a matter of 10 days, it moved me from bordering on severe to moderate, nudging mild. Unfortunately almost nobody else had the same effects from selenium, so I have not included that in the roadmap.



Some of the things you mention are already in the roadmap: mycotoxins/CIRS, SIBO, Lyme and CCI. They could of course be expanded or re-prioritised.

With heavy metal toxicity I've never seen much evidence of this being an important causal factor in ME/CFS. I've looked for studies on this, and looked for ME/CFS doctors who treat this, but have found nothing. Likewise for other environmental toxins: I've not seen much evidence that detox treatments help ME/CFS.

Organophosphate pesticides have been linked to ME/CFS, and are mentioned in the roadmap, but there's not much you can do about these, if you have already been exposed. Organophosphate are not really bioaccumulative, so detoxification is not appropriate. If you have been hit with serious organophosphate poisoning in the past (as I was), it may have caused some damage that predisposes to ME/CFS; but there's not much you can do about it now.

For ozone, there are studies by an Italian clinic that supposedly show benefit; but an Italian patient told me the clinic is something of a scam, because they only tend to treat mild patients, who may not even have ME/CFS.

For UVBI, IV nutrients, chelation, toxin binding protocols, liver detox phase 1&2 protocols, I'd like to see some evidence of such treatments being effective in ME/CFS.



Our immune systems are created to handle these infections, however, and these infections are typically well controlled once the immune system isn’t failing under other heavy toxic burdens.

I tend to agree with this. I think there is some unknown factor in ME/CFS which weakens immunity, and makes viral clearance more difficult.

The treatment I am currently following, Dr Markov's autovaccine treatment, posits that ME/CFS is caused by bacterial toxins leaking into the bloodstream from a bacterial dysbiosis in the kidneys. Dr Markov believes all the symptoms of ME/CFS are due to these toxins. I think these bacterial toxins might also hamper the immune response, so that intracellular viral infections cannot be properly cleared.
 
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Rufous McKinney

Senior Member
Messages
13,249
after which patients themselves may go on to greater things.

May That Take Place!

Unfortunately almost nobody else had the same effects from selenium, so I have not included that in the roadmap.

I am experimenting with the new cure called: Five Walnuts per day (and that seems to be about selenium)

The treatment I am currently following, Dr Markov's autovaccine treatment,

Is this treatment available without physically going to Dr. Markov in Ukraine?
 

Rufous McKinney

Senior Member
Messages
13,249
Is this treatment available without physically going to Dr. Markov in Ukraine?

I found the Dr. Markov documents for working with the clinic....with more perseverance, thanks @Hip


My daughter is mad at me. Why is her mother not cured? Why is her mother not treated?

I may decide to sign up with Dr. Markov. The issue is I leave soon to go see my daughter in Mexico where you can't ship anything called a drug. Needles and vials and ampules Oh My.
 

Swim15

Senior Member
Messages
369
Points taken @Hip - it’s hard to pinpoint what to go after even when taking the evidence based medicine approach sinxe so many studies list massive improvements in CFS from lots of different treatments but people here don’t respond the same. Obviously the breadth of the diagnosis doesn’t help and makes you wonder where they’re getting the patients sometimes.


What I can say is that when we have someone come in with ME/CFS symptoms I generally want to order the following (which ones and in which order depends almost entirely on clinical presentation)

1. Stool test (Genova GI effects 3 day collection preferably)
2. environmental toxin panel (urine)
3. Mycotoxin testing (this needs to be urine first, other potentials later)
4. SIBO testing
5. Heavy metal (primarily mercury) challenge testing
6. Comprehensive nutrient panel
7. Inflammatory markers (MMP9, VIP, TGF-beta1, VEGF, etc and autoimmune markers)

Then we start on balancing nutrients, toxin detox, fluoride detox, treating infections, working on the gut/microbiome. Use IV nutrients, IV chelation, UVBI, ozone, and others to help boost the body’s systems during treatment.

We have a pretty good track record of getting people better even some that have been bed bound for a long time.

Obviously not everyone is a one size fits all but Ive been pleasantly surprised by the progress most patients make, many that are just as severe as the patient population here.

Just my experience to contribute
 

lint7

Senior Member
Messages
116
Where do you work that doctors consider these things? I've never met a doctor who would recommend almost any of these tests or treatments (I'm from Canada and our medical system is a bit different so maybe that explains it.)
 

Rufous McKinney

Senior Member
Messages
13,249
I've never met a doctor who would recommend almost any of these tests or treatments

most of that is Pay For It Yourself type work.

The existing medical system isn't interested in your heavy metals, or your nutrient shortages.

I mean, I could pay somebody else in a van to take a full Boyd scan and tell me many things which are wrong.

My insurance, so fabulous, would never pay for any of that.
 

Rufous McKinney

Senior Member
Messages
13,249
Where do you work that doctors consider these things?

Twice I went to the eye doctors seeking treatment for severe eye problems /autoimmune/ maybe a whole list of eye problems.

But these eye doctors told me to get chelated. One doctor got chelated 500 times. I asked what happened between chelation 499 and 500.

Ever notice how you don't get answers to direct questions?

They offer no medical treatment and in fact won't awknowledge any of this. Tossed out of the office, twice, literally

"But I can't drive..." (that was the first time, I'm unable to go to meetings because I can't drive for six hours)

So they get paid for this service (nothing)

My husband gets operations, and major tests out of the same medical group.
 

hapl808

Senior Member
Messages
2,052
Ever notice how you don't get answers to direct questions?

Lots of roundabout answers. Whether a doctor spends 5 minutes or 45 minutes with you, usually the one thing you can count on is an impressive display of knowledge that has no real impact on your own situation.

Then we start on balancing nutrients, toxin detox, fluoride detox, treating infections, working on the gut/microbiome. Use IV nutrients, IV chelation, UVBI, ozone, and others to help boost the body’s systems during treatment.

We have a pretty good track record of getting people better even some that have been bed bound for a long time.

Obviously not everyone is a one size fits all but Ive been pleasantly surprised by the progress most patients make, many that are just as severe as the patient population here.

How is your follow-up? Have you gotten people who have been bed bound for years into a good state and then maintained it for years? ME/CFS study is confounded by short term improvements. Goldstein reported on this, since he could often get a patient into 'remission' supposedly in a few sessions, but often it lasted months or years and then stopped working.

I always wonder how many long term improvements are just a better lifestyle. If you're not practicing good sleep hygiene, an extremely healthy diet, a perfect BMI, etc - then improving those things will likely improve any situation. Beyond that, however…

In my experience talking to patients, those in the mild-moderate range report the most improvements. Partially, again my own opinion, because that's the range where it's hardest to quantify improvement or decline. If I get 'less tired' after a 'normal day', that's beyond subjective (but not to say it's not real). That's different than people who literally can't stand up without support or crash after 10 minutes of computer work.

I'm convinced that if I could go back to mild-moderate with what I know now, it would be easy to maintain that level. That's still very limited by our scales, but I know exactly how to manage diet, which supplements work, strict pacing and recovery, avoiding all allergic triggers (especially environmental), and so forth. The bigger trick seems to be going from moderate-severe and getting any better. That has eluded me for the past 5-10 years. Prior to that I just pinballed around mild and moderate ranges.
 

hapl808

Senior Member
Messages
2,052
Specifically, I have a few friends in the mild-moderate range. They're always swearing their new treatment (ozone, jaw cavitation surgery, IV chelation, etc) is amazing and they're on the road to a cure. But from an outside perspective, their actual abilities and health never seem to change that much, just their attitude.
 

Rufous McKinney

Senior Member
Messages
13,249
I was mild for a very long time. Decades.

At around fifty, I lost at least 45 pounds gradually that stayed off. I sure looked alot better.

But I was physically stronger then, than now.

Made alot of dietary changes, seem to have fewer joint problems.

My gut is ALOT better. I think I can describe a few improvements, from this gut improvement. Yet I don't feel 'transformed".

Moderate now. Doing less and less, even tho I seem to "gain improvements" here and there.

I think its incredibly hard to evaluate our own condition. We really need less subjective means of evaluating responses.

(I still have about six food items from last week that got blamed for a bad stomach night, and therefore all six food items cannot ever be consumed again: even tho frankly I have no proof any of the food caused the problem.). This is a really lousy method for determining what is Ok to eat, or what is triggering. (my mistake, eating so many different things at one time) (I'd done a grocery order and decided GET CHIPS, get different beans, and my husband had bought this weird guacamole.)
 

lenora

Senior Member
Messages
4,913
Hello @Swim15. First off, congrats for hanging in there with medical school. It can't be easy and you deserve a lot of credit. Also, hello to everyone else. Input is welcome by all...at least as far as I'm concerned.

I have a lot of details from a long and illness prone life. In the end, these are my thoughts. I do believe as my neurologist who recently died did, that in the future medicine is going to be a combination of medication and holistic therapies. But insofar as having answers to a lot of our problems, I don't believe we'll ever have them in the foreseeable future.

Yes, probably 100% if us have been exposed to environmental problems, including mold, mildew and others. Poisonings....ditto. An accumulation of the same can lead to problems. Some people are affected, while others aren't. What is the answer...and will there ever be one? Even I sometimes wonder if I have a true problem....and why didn't I develop mental illness or a host of other conditions that are around us?

What accounts for the teenage and sometimes younger people with multiple symptoms? Personally, I feel that a lot of viruses and infections aren't given enough attention insofar as rest, nutrition, too much exercise too soon, not enough sleep and many of us wouldn't heed these examples anyway. I know I wouldn't have.

But I also think a virus or infections weaken the immune system and many of us simply can't recover health. Stress adds to this in many ways.

In the end, there are just a lot of questions and even now I can't say with certainty that any answer (apart from a biomarker) is a correct one. I'm open to any input, find it interesting and will at least read it. Besides, the symptoms of many illnesses will change over time. Wishing everyone the best of health. Yours, Lenora
 
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Hip

Senior Member
Messages
17,824
What I can say is that when we have someone come in with ME/CFS symptoms I generally want to order the following (which ones and in which order depends almost entirely on clinical presentation)

1. Stool test (Genova GI effects 3 day collection preferably)
2. environmental toxin panel (urine)
3. Mycotoxin testing (this needs to be urine first, other potentials later)
4. SIBO testing
5. Heavy metal (primarily mercury) challenge testing
6. Comprehensive nutrient panel
7. Inflammatory markers (MMP9, VIP, TGF-beta1, VEGF, etc and autoimmune markers)

Perhaps we can chat about some of these at some point, and see what might be included.

Generally I have less energy and mental focus since catching COVID in April 2022. I know seem to have long COVID on top of ME/CFS. So unfortunately I am more limited in the projects I can undertake.