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

[rodgergrummidge]

Hip,

Modafinil “aka Provigil” has been shown to help treat Chronic Fatigue Syndrome.
.

Hip

While there dont appear to be any trials specifically examining the use of modafinil/armomodafinil in fatigue of ME/CFS patients, it has been found in multiple clinical trials to improve fatigue. I have summarized the studies below.

Clearly they are not curative and dont seem to work in all ME/CFS patients. However, they are not associated with addiction and have fairly good safety profiles, so they are being increasingly examined for their potential benefit in ME/CFS.

Modafinil and Armomodafinil have been found to improve fatigue symptoms in some clinical clinical conditions. For example, Armodafinil was tested in 70 patients with HIV to evaluate its efficacy and safety for fatigue and depressive symptoms. In intention-to-treat analyses, the fatigue response rate to armodafinil was 75% and to placebo 26% (Rabkin 2011, Psychosomatics 52(4):328–36.). Armodafinil appeared to be effective in alleviating fatigue and was well tolerated.

In another clinical trial, using modafinil for fatigue in 105 HIV/AIDS patients (Rabkin 2010,
Journal of Clinical Psychiatry 71(6):707–15). In the intention-to-treat analyses, the fatigue response rate to modafinil was 73% and to placebo 28%.

Modafinil has also been examined in a large clinical trial for the treatment of fatigue in 631 patients with cancer (Jean-Pierre 2010 Cancer 116(14):3513–20.).They showed a significant interaction between treatment condition (modafinil 200mg/day) and baseline fatigue, where patients with severe baseline fatigue benefited from modafinil and patients with mild or moderate fatigue did not.

food for thought

Rodger

 

[Hip]

@rodgergrummidge

I did actually include modafinil in the roadmap of chronic fatigue syndrome testing and treatment as a result of @joanna91's suggestion earlier in this thread. If you have other ideas for what might be important to include, please let me know.

 

[pattismith]

Wonderful document, many thanks to the autor!

 

[rodgergrummidge]

@rodgergrummidge

I did actually include modafinil in the roadmap document as a result of @joanna91's suggestion earlier in this thread. If you have other ideas for what might be important to include, please let me know.

great!

 

[Hip]

Nothing in there on antiretroviral therapy. Any thoughts?

The roadmap I try to keep evidence-based, focused on treatments that have proven effective in studies, and focused on established treatments that are used and considered effective by the internationally renowned ME/CFS doctors. Sometimes if there are some anecdotal reports regarding the efficacy of a therapy for ME/CFS, I might include that, if the reports are detailed and provided by reliable people.

There are a lot of other treatments that ME/CFS patients experiment with, but I only include treatments that are known to work (at least for a subset of patients).


No doctor I am aware of is treating ME/CFS as a retroviral infection (except possibly Dr Weir, but I am not sure), and we don't have any published evidence that a retrovirus might be involved, apart from a comment by Prof Lipkin saying that he found preliminary evidence of retroviruses in ME/CFS patients via high throughput sequencing (in an unpublished study).

Some people have reported mild improvements on tenofovir, and Dr Chia reports a few of his patients achieve improvements on tenofovir; but that does not prove a retroviral etiology, since tenofovir is a potent immunomodulator that may fight viral infections by its Th1-stimulating effects. I am not ruling out the possibility that in the future someone might find a retrovirus in ME/CFS, but since at present we have pretty much zero evidence of a retroviral involvement, there's no basis for talking about retroviruses in the roadmap.

But if I come across a lot more reliable anecdotal reports about tenofovir (or the tenofovir + raltegravir combo) consistently making major improvements to ME/CFS symptoms, that might be enough evidence to warrant inclusion.



EDIT 2018: I see that Dr Chia has reported benefit from tenofovir, so I have not added this antiretroviral drug to the roadmap. Tenofovir is a potent immunomodulator, so that may explain its benefits for ME/CFS, rather than its antiretroviral effects. Though I guess either are possible.

 

[fingers2022]

No doctor I am aware of is treating ME/CFS as a retroviral infection, and we don't have any published evidence that a retrovirus might be involved, apart from a comment by Prof Lipkin saying that he found preliminary evidence of retroviruses in ME/CFS patients via high throughput sequencing (in an unpublished study).

Several doctors, several studies.
Lipkin? Government puppet.

 

[Hip]

Several doctors, several studies.
Lipkin? Government puppet.

Why are so many retrovirus advocates like yourself susceptible to wacky conspiracy theories?

(You might want to answer that question on an appropriate thread — and it's a genuine question).

 

[fingers2022]

Why are so many retrovirus advocates like yourself susceptible to wacky conspiracy theories?

(You might want to answer that question on an appropriate thread — and it's a genuine question).

Is this not an appropriate thread?
Yes, it's a very good and genuine question. My attempts at answering...

1) Not really thinking of myself as an advocate, just looking for possible ways out of this...experience with ART so far is quite positive, but I'm not unequivocal;
2) Conspiracy theories; we all have to try to work out what is conspiracy and what is simply people with their own agendas; Wessely and crew have their agendas...no? Lipkin has his agenda too; who pays the piper?
3) The retroviral theory seemingly has a lot of good science behind it; do your proposed treatments have just as good science? Are they proven effective?

Appreciate the dialogue. Hopefully you and I will continue to get on and have further constructive dialogue. Let's get Wessely talking to Lipkin, Mikovits....whoever you think constructive. Psychiatry, virology, politics. Let's get to the underlying truth.

 

[Mollymolly]

Do you have English road map for CFS.?

 

[Hip]

Do you have English road map for CFS.?

The roadmap is in English!

 

[Alvin2]

The roadmap is in English!

Indeed, but perhaps Molly wants it in ye olde english (for Shakespearean readers?)

 

[Mollymolly]

Yes my bad , I saw it in French but then I got it thank you ..

 

[Hip]

Yes my bad , I saw it in French but then I got it thank you ..

Ah yes, there is a French version, kindly translated by Frederic83 on this forum.

 

[rodgergrummidge]

Ah yes, there is French version, kindly translated by Frederic83 on this forum.

great work and contribution @Hip

 

[Alvin2]

I'm thinking we should expand its appeal to raise the profile of ME/CFS research. A few more languages just might do the trick, so i think we should follow the lead set by the bible and translate it to LOLcat and Klingon

 

[.jm.]

what would be most helpful is to add to the mini roadmap a procedure procedure and detailed lab ordering guide and checklist and summary of how to interpret results, and even some checklists for symptoms.

This, for example, is informative, but it is not a procedure that is easy to follow:
"Elevated IgG antibody titers for cytomegalovirus indicate an active chronic CMV infection, says Dr Lerner. He says you must test for IgG, not IgM, as the IgM titer is insensitive."

If I were to order the lab from Labcorp, what result means elevated? What about Quest? Clinic? What subgroup of CFS symptoms are indicative of CMV?

May I suggest that a place to start is to build a google spreadsheet in approximately the order of likelihood for the labs to be ordered, the order numbers for Labcorp and Quest, A spot to fill in your results, and the interpretation of the results. Then when moving from doctor-to-dotor, you already have a summary of all the things your CFS is or is-not.

Also, how about a checklist of symptoms with frequency qualifiers [never, one day a week, 4-5 days a week, nearly every day] and severity qualifiers. This could be used on a weekly basis to track symptoms over time while seeking treatment. ("how often did I have a sore throat?" )

 

[Hip]

what would be most helpful is to add to the mini roadmap a procedure procedure and detailed lab ordering guide and checklist and summary of how to interpret results, and even some checklists for symptoms.

This, for example, is informative, but it is not a procedure that is easy to follow:
"Elevated IgG antibody titers for cytomegalovirus indicate an active chronic CMV infection, says Dr Lerner. He says you must test for IgG, not IgM, as the IgM titer is insensitive."

I agree, but unfortunately it is hard to find any precise information on what the ME/CFS specialist doctors do in terms of viral testing; I was not able to find what Dr Lerner defines as "elevated IgG antibody titers for cytomegalovirus," nor which lab he used for testing CMV.

I was able to get this information for EBV (partially) and HHV-6, but unfortunately not for CMV.

You sometimes find this info in published studies by ME/CFS doctors, or in articles or presentations made by ME/CFS doctors; but the info is hard to come by.


Regarding a lab ordering guide: do you mean a step-by-step procedure for ordering a lab test? I guess that would be very useful, although I have no personal experience with this ordering, as I am in the UK. But if we could find patients in the US who have been through the LabCorp / Quest system and know how to order, and were willing to write up some instructions on this forum, then the roadmap could link to those instructions.

The roadmap does provide a weblink to the order page for each LabCorp and Quest test: for example, where the roadmap says:

antibody titers of 1:640 or higher in the Quest EBV IgG VCA test and titers 1:160 or higher in the Quest EBV IgG EA test indicate active EBV infection, says Dr Montoya.

If you click on those links, it takes you to the test ordering page on the Quest website. I think those are the correct tests, but am not entirely sure (because the exact test code is not give in Montoya's published studies, nor in Lerner's).

What subgroup of CFS symptoms are indicative of CMV?

ME/CFS is linked to certain herpesvirus and enterovirus infections, but these do not create their own symptom profile as far as we know. So there is no way of working out from your ME/CFS symptoms which virus you have.

You can sometimes get clues to which virus may be causing your ME/CFS by its incubation period in the initial acute infection (this is the period of time between first exposure to the virus if known, and the appearance of the first symptoms).

May I suggest that a place to start is to build a google spreadsheet in approximately the order of likelihood for the labs to be ordered, the order numbers for Labcorp and Quest, A spot to fill in your results, and the interpretation of the results. Then when moving from doctor-to-dotor, you already have a summary of all the things your CFS is or is-not.

That's a fantastic idea, I really like it. I will try and figure out something along those lines.

But I really need to try to get more info on which lab tested are used for CMV, and what the threshold titer for an active infection is. And I also need this info for EBV: again Lerner just says higher titers to EBV IgM VCA test and/or the EBV EA diffuse is diagnostic for active EBV infection, but does not say what he means by high titers, nor which lab he used. Dr Montoya does give this info though.

I also have no information on the Chlamydia pneumoniae test regularly used by Dr Chia and other drs, and the parvovirus B19 test.

It's possible that if I write to these doctors, they might provide the right info (Lerner however died a few years ago). But all these things take a lot of time when you have brain fog, and also I have quite bad ADHD. The roadmap was originally intended to be a collaborative effort, but I ended up doing all of it.


But yes this idea of an interactive webpage or spreadsheet where you could enter your lab test values and then on the basis of those values get info as to what the various ME/CFS doctors would prescribe in terms of treatment would be very nice.

 

[.jm.]

I
That's a fantastic idea, I really like it. I will try and figure out something along those lines.

I'm going thought this right now and I'm seeing Dr. Chia in May which may change. I'm happy to start by filling in the tests my sports med doc and I are doing and we can continue to fill it in over time. (my doc mostly sees kids for sprained ankles. This is way outside of his league, but he is cooperative to testing for anything and everything within reason. Almost anything is within reason right now) I forgot that this is a worldwide internet and that half of the audience is outside of the US.

Anyway, our goal could be to make sure that a patient can take a procedure to his or her cooperative primary care physician. And together they have clear instructions for a set of labs to order, from where to order them so that they can be interpreted using the criteria therein, and how to interpret them for obvious causes. And if done correctly, this should work at least 50% of the time.

I'l PM you my google account. We can link up and share a folder and I'll offer you what I have that may be useful and give it a start.

P.s. There are a few things missing from your "ruling out conditions." You may want to add:

• Addison's and Cushing's. These are ruled out with an ACTH stimulation test. Generally, they rare.
• Iron decency: Test for Ferritin. Specifically test for ferritin, not hemoglobin or iron. There is antipodal evince from lots of athletes that moderately low ferritin predicts athletic fatigue even without anemia and even when it isn't medically considered low. If ferritin is below 50ug/dl, supplement with oral iron sulfate until it is above 50ug/dl. This is to verify two things: (1) that oral absorption of iron is working properly by your digestion system; and (2) rule out iron level as a cause of fatigue. Note that when retesting for ferritin, generally you should stop taking supplement for a week to prevent false high values. There is a low a published paper that goes with this and I'll find you the link. there is also a relatively inexpensive ($~200 for a 10 injection course totaling 1000mg) injectable iron suplement available in the US called INFeD that can be used instead of oral iron if upset stomach issue are a big problem and without the high cost of infusion iron therapy.

In addition to this, the rarer stuff includes

• Cystic fibrosis (if you are older than 30 you probably don't have it)
• Mitochondrial diseases. I'll get you a list of what sports medicine and neurology have tested me for. Most are vary rare and don't onset suddenly.
• Women's hormones. I have heard anictotal support for prescribing progesterone.
• List all diseases that can be rulled out with a negative ANA
• neurological and muscular diseases that can be ruled out with a normal EMG

Some of us who went from being in top athletic shape to struggling have described the feeling like being stuck at lactic threshold. It might be of interest for those of us in this situation to do a treadmill lactic acid study, which can be done at home on a treadmill using an accurate finger prick test. If you know what your previous lactic threshold was or if the graph doesn't look normal, you may have evidence of a metabolic problem. There is also a lab that is done that measures lactic acid to paruvic acid ratio. It might be interesting to draw blood for this lab immanently after excising.

 

[CFS_for_19_years]

Addison's and Cushing's. These are ruled out with an ACTH stimulation test. Generally, they rare.

Cushing's is ruled out with a 24-hour urine test for cortisol OR two midnight salivary cortisol tests. These are generally ordered by an endocrinologist.

 

[Hip]

Anyway, our goal could be to make sure that a patient can take a procedure to his or her cooperative primary care physician. And together they have clear instructions for a set of labs to order, from where to order them so that they can be interpreted using the criteria therein, and how to interpret them for obvious causes.

Yes, that's the basic idea. Although you have to be careful not to give medical advice. No medical advice is a rule of this forum, and one wouldn't want to be putting medical advice into the roadmap either. The roadmap can inform you of what tests various ME/CFS doctors perform, what treatments they use, and provide links to studies or documents by these doctors where they detail their testing and treatment protocols. Then if you want to follow those doctor's protocols, that's a decision you and your own doctor must make alone.

There are a few things missing from your "ruling out conditions."

There are actually dozens of conditions that can mimic ME/CFS, too many to detail in the roadmap, but there are links in the roadmap to comprehensive lists of ME/CFS-mimicking conditions.

The roadmap is aimed at beginners and newly-diagnosed patients, so it is intended to show people the ropes, but it cannot really cover every possible aspect of ME/CFS. As a document it is large already (about 45 printed pages), so you don't want to put too much into it, as it may get overwhelming.

Test for Ferritin.

Anemia is included in the roadmap, as this can cause ME/CFS-like symptoms. Low ferritin might cause some fatigue, but fatigue itself is not the same as ME/CFS. So I don't think low ferritin would be able to mimic ME/CFS. Low ferritin could be included in the roadmap, but you would probably then want a new section in the roadmap entitled "Other factors that can cause fatigue" and include it there.

I have a recurrent urinary tract infection, and that causes noticeably more fatigue when it flares up.

Women's hormones. I have heard anictotal support for prescribing progesterone.

Most of the stuff in the roadmap is backed up by published studies or is a protocol used by a famous ME/CFS doctor. So to include progesterone, there would need to be some supportive published evidence for efficacy, or it would need to be employed by an ME/CFS doctor.

I try to keep the roadmap as an evidence based document, with every statement in the roadmap backed up by a reference. Of course, many ME/CFS patients myself included will try things out speculatively, so see if they help, even if there is no evidence for it. Progesterone I experimented with and found it has some mild anti-anxiety effects.