Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

[Hip]

Introductory Overview of Chronic Fatigue Syndrome (ME/CFS) Treatments

For those recently diagnosed with chronic fatigue syndrome (ME/CFS), getting to grips with all the ME/CFS treatments available can be a little daunting.

Familiarizing yourself with the various ME/CFS treatments is a good idea, because often a treatment which works for one ME/CFS patient may not work for the next, so some experimentation is usually required before you hit upon the treatment or treatments which work best for you.

In order to provide an overview of the major ME/CFS treatments available, I have compiled a roadmap document that surveys them. This roadmap to ME/CFS treatments can be found here:

➤ ME/CFS Roadmap For Testing And Treatment

The roadmap covers the many factors (viruses, bacteria, toxins, etc) which are suspected causal agents linked to precipitating ME/CFS, and it details how to tackle and treat these suspected causal factors.

Hopefully this roadmap will provide a useful introductory orientation for ME/CFS patients at the beginning of the learning curve of ME/CFS testing and treatment.



Note: I am slowly expanding this roadmap document to include more treatments, so if you know of an important ME/CFS treatment with a good evidence base that is not currently in the roadmap and might usefully be included, please post details of that treatment here, along with web links to the evidence of its efficacy (preferably published studies, or information provided by ME/CFS doctors). Any errors or inaccuracies found in the document can be reported here too.

EDIT 2016: there is now a French version of the roadmap: Syndrome De Fatigue Chronique / Encéphalomyélite Myalgique — Une Feuille de Route de Tests et de Traitements

EDIT 2018: a new much briefer mini roadmap is now available.

EDIT 2019: updated the roadmap links from its old address at sites.google.com/site/cfstestingandtreatmentroadmap to its new address at mecfsroadmap.altervista.org

 

[xchocoholic]

Great info @Hip.

I would just like to add that it's important to recognize that some pwcs have multiple scenarios and need a combo of treatments. I saw you mentioned multiple treatments may be necessary but wanted to make sure that stood out.

We have so much to deal with and with our cognitive problems that it's easy to get trapped into singular thinking. For ex. Many celiacs have more diagnosises than just celiac. I've seen Lymies, MS and ataxia patients report this too.

Also wanted to add that Hashimoto's can be present with normal thyroid levels. I'm assuming thyroid level tests would vary over time from normal to hypo to hyper for those with Hashi's.

Tx .. x

 

[GracieJ]

That is an amazing list.

If I were just now being diagnosed, I can tell you right off that I could not even start to get all those tests. It would be overwhelming. But at least I would know what direction to start heading.

It is a great resource for educating self and doctors, though. Thanks for all the work that went into it.

I hope to see an alternative medicine version of this someday. I can tolerate almost zero meds, so after the diagnostics, I'd be in the health food store anyway.

Could you move hypothyroidism to co-morbidities?

 

[minkeygirl]

A regular doctor who is clueless about ME/CFS will most likely be resistant to ordering some of those labs. Mine ran a few odd ones I requested so I could show my NP, then she ripped me a new one every time she saw me about how she ran expensive tests that the insurance company paid for that she couldn't use. I changed PCP's since her ego got in the way and she resented my having a doc who actually could help me.

 

[heapsreal]

@Hip your a legend, love your work.

 

[SDSue]

This is absolutely fabulous! Thank you for all the hard work in putting it together.

A roadmap is much needed, and none will satisfy everyone. But I find yours to be a succinct plan that I sure could have used several years ago to save a lot of heartache and time.

 

[Seven7]

@Hip: I would add the equilibrant for treatment for Caosaxie (since is what is called now and website to order since is OTC). Also It took care fo my Parvo.

Excellent work! If I could only award medals

 

[minkeygirl]

@lnester7 I didn't equilibrate helped Parvo. I have Oxymatrine so I may have to add that to my protocol. Thanks for the info.

 

[heapsreal]

i will try and dig up some info on interferon inducers as i think these can help with most infections through improving immune function especially nk function, they seem to be used alot in herpes virus infections but also i think would play apart in treating enteroviral infections? Although i think you have investergated these yourself.

Maybe a run down on antivirals, which one for which virus?

Also a run down on treating sinusitis?

 

[Hip]

I would just like to add that it's important to recognize that some pwcs have multiple scenarios and need a combo of treatments. I saw you mentioned multiple treatments may be necessary but wanted to make sure that stood out.

Good point. I have amended the document to include an extra sentence (in bold text below) making this clear. The roadmap now reads:

"Once you have ruled out common diseases with similar symptoms, and have settled on a diagnosis of ME/CFS, then next stage is to try to identify the underlying factors (infections, toxic exposures, etc) that may be causing or contributing to your ME/CFS. ME/CFS patients may have several factors contributing to their symptoms, and in order best treat ME/CFS, these factors need to be identified and addressed. This is ideally performed with the help of a doctor specializing in chronic fatigue syndrome laboratory testing and treatment."

 

[Hip]

That is an amazing list.

If I were just now being diagnosed, I can tell you right off that I could not even start to get all those tests. It would be overwhelming. But at least I would know what direction to start heading.

Yeah, especially when you are very fatigued, brain fogged or semi housebound, testing can be overwhelming. Though note that the roadmap does contain the following sentence, to indicate that you can often go ahead with a treatment even without testing:

"While it is always better to test for pathogens or health conditions before using treatments, because some tests are expensive, not available in all countries, or might not always be reliable or sensitive enough to detect certain pathogens, you may choose to bypass the test and go straight to treatment."

It is a great resource for educating self and doctors, though. Thanks for all the work that went into it.

That was one of the thoughts I had when compiling it: if only a similar document could be given out the numerous primary care doctors (especially in the UK) who often know very little about treating ME/CFS, because medical schools do not include such treatment in their curricula (they only teach the pseudoscientific somatoform views on ME/CFS).

I hope to see an alternative medicine version of this someday. I can tolerate almost zero meds, so after the diagnostics, I'd be in the health food store anyway.

I have not excluded alternative medicine; many would consider the use of vitamins and supplements alternative medicine, and supplements are included in the roadmap when there is good evidence (eg: published studies) of their efficacy. I wanted to make a responsibly evidenced-based document.

By evidence I mean published studies, treatments that the leading ME/CFS doctors have found to be effective, and treatments that have a good anecdotal evidence base (for example, Richard van Konynenburg's methylation treatment has no published studies, but has a very good evidence base on ME/CFS forums, with many patients reporting significant benefits).

Could you move hypothyroidism to co-morbidities?

I don't believe hypothyroidism is a common comorbidity of ME/CFS. Hashimoto's is, but not hypothyroidism in general.

By a common comorbidity of ME/CFS, we mean a condition that, statistically, is found more commonly in ME/CFS than it is in the general population. Researchers are often interested in common comorbidities of a disease, because these comorbidities may give a hint as to the mechanism of disease; and also, there is always the logical possibility that a common comorbidity is actually playing a causal role in the disease.

 

[Hip]

@Hip: I would add the equilibrant for treatment for Caosaxie (since is what is called now and website to order since is OTC)

I have now added a link to the Equilibrant website in the oxymatrine section.

 

[Hip]

This is absolutely fabulous! Thank you for all the hard work in putting it together.

A roadmap is much needed, and none will satisfy everyone. But I find yours to be a succinct plan that I sure could have used several years ago to save a lot of heartache and time.

I wrote slowly over a few years, brain fog permitting. Every time I came across a good ME/CFS treatment, I would add it to the document.

 

[Hip]

i will try and dig up some info on interferon inducers as i think these can help with most infections through improving immune function especially nk function, they seem to be used alot in herpes virus infections but also i think would play apart in treating enteroviral infections? Although i think you have investergated these yourself.

If you can find some good evidence that these treat ME/CFS, that would be great. As mentioned above, I have tried to keep the roadmap evidenced-based, in part so that any scientist or medical professional that comes across it will realize that ME/CFS is a real neurological disease that has been shown in published studies to be treatable.

I know there is evidence for the efficacy of Ampligen for ME/CFS, which is an interferon inducer. And of course Dr Chia's research with intravenous interferon showed this can put some ME/CFS patients into remission for many months.

Maybe a run down on antivirals, which one for which virus?

The 1st Round Treatments section does detail which antivirals can be used for each virus. And there's some more antiviral info in the 3rd Round Treatments section. Maybe what I've got is not a very clear presentation of the antivirals?

Also a run down on treating sinusitis?

Yeah, that section is lacking. There needs to be more info on sinusitis diagnosis and treatment (eg, how to diagnose viral, bacteria and fungal sinusitis, and how to treat them).

 

[Hip]

Thanks for all these suggestions, guys. It's very helpful to have them.

 

[heapsreal]

Thanks for all these suggestions, guys. It's very helpful to have them.

I think its great to have you put it all together.

 

[Soundthealarm21]

Wow! I wish I had this last March! A lot of great information in here.

I can add information on Mold testing and clean up if you need.

@Hip if you'd like some help I can proofread it and note mistakes/misspellings.

 

[CFS_for_19_years]

I would place greater emphasis on treating active bacterial infections such as ear infections and sinusitis. These should be treated right away and not put on the back burner. Even with lots of antibiotics from medical doctors, it took a naturopath to find me the right supplements to help get rid of chronic sinusitis. I'm mostly talking about the first years of CFS/ME when all you do is run fevers, sleep and sweat a lot at night.

Chronic sinusitis, according to my allergist, is a sign of allergies that should be treated with immunotherapy (allergy shots) and avoidance of the allergen (mold, pet dander, dust mites, etc.).

After being sick for 23+ years is there any sense in running all those viral serological tests? I could take what you've written and show it to an Infectious Disease specialist within my HMO and I could brace myself for the letdown.

 

[minkeygirl]

@CFS_for_19_years @Hip Calls this a roadmap for beginners. I take that for people who are newly diagnosed or suspect they have ME/CFS and need to know where to start. Not for those of us sick for years on end.

 

[Gingergrrl]

@Hip, I printed out your prior Roadmap and read it cover to cover before my appt at OMI (and it was was fantastic, amazing job.)

Is this a new Roadmap with added info or the same one with new formatting? Sorry if you already explained this and I missed it!

ETA: for the moderators, can this be a permanent thread at the top of one of the forums, so all newcomers (and all of us!) will see it without having to search for it?