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

[Folk]

I'm a little outdated probably, but i'm guessing the Fibromyalgia roadmap would be the same right?

I was diagnosed with fibromyalgia but you know, I live in Brazil, they won't work with differences between similar diseases..


That's and epic post btw.

 

[Hip]

Oi tudo bem, @Folk (I used to go out with a Brazilian girl many years ago).

There are some areas of the ME/CFS roadmap that apply to fibromyalgia, and if you search for the word "fibromyalgia" in the roadmap, you'll see that I make comments about fibromyalgia quite a few times.

But I don't have that much knowledge about fibromyalgia to be able to tell you which things on the roadmap apply to fibromyalgia, and which do not. So you would need to check these yourself. I know the low-dose naltrexone, sublingual vitamin B12 and methylation treatments work for both ME/CFS and fibromyalgia.


On the viral side, note that Dr Pridgen has a theory that fibromyalgia is caused by a herpes simplex virus infection, and is currently trialling a clever new antiviral treatment for fibromyalgia that is based on fighting this infection using a specific combination of antiviral drugs. You can read about Dr Pridgen's trial here. He seems to be getting good results.

Basically, Pridgen uses antivirals such as valacyclovir or famciclovir, in combination with COX-2 inhibitor drugs such as celecoxib, in order to treat herpes simplex infections in fibromyalgia patients. COX-2 inhibitors have a potent antiviral effect on herpes simplex. Pridgen is going to publish full details of his trial later this month (November), so look out for this info when it is published later this month.

 

[Folk]

Yeah I've read about it. Really hopping Dr. Pridgen work show results. People use to say he is really smart...

I actually don't know if what I have is Fibro or something else since every doctor say I have a "slighly different fibromyalgia" wathever that is. I mean, I can endure higher pressure than those with fibromyalgia, but the soft touch of thing like clothes makes me hurt wich would be my allodynia.

Massage normally makes me worse if made by someone else because they are tend to be very gentle while I only find relief if it's a very rough massage (wich till now, only I know how to do).

So it's pretty confusing

 

[charlie1]

@Hip

Thanks so much for creating this document! It's so useful!

Post-exertional malaise: symptoms profoundly worsen soon after physical and/or mental exertion, leaving an individual very incapacitated for several days, or even weeks, after this exertion.

I wonder if the definition of PEM can be changed to include that it can occur even days after physical/mental exertion. The latter is the case for some of us.

Thanks again!

 

[Hip]

I wonder if the definition of PEM can be changed to include that it can occur even days after physical/mental exertion. The latter is the case for some of us.

That's a good suggestion, thanks.

According to the ICC: "Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days."

I could change the roadmap to the following text (which just about fits in the box):

"Post-exertional malaise: symptoms profoundly worsen hours or days after physical or mental exertion, leaving an individual very incapacitated for a few days, or even weeks, after this exertion."

However, I am not sure if that reads as clearly as the original.

 

[oceiv]

Thanks, @Hip for this thorough, useful document!

Re: PEM. PEM seems to vary widely between patients and even vary in its presentation for one patient. There's an ongoing thread about this here. I haven't been able to keep up with it. For me, PEM can start during an activity and last for a few hours, few days, few months or even turn into a longer illness setback. Maybe it would be good to define PEM in the first sentence and note the factors, which may vary, in the second sentence.

Example: Post-exertional malaise: symptoms profoundly worsen during and/or after physical and/or mental exertion, leaving an individual very incapacitated. Patients vary in their timing of PEM onset and duration as well as severity. PEM can last for several days, weeks or even months after this exertion. PEM onset can be during exertion, soon after exertion or even days after exertion. (Your wording would vary, but you get the idea).

My question for you is (asked earlier in a less relevant thread): Does the co-cure good doctor list exist anywhere now, either on another site or in archive form? The link in your document brings up a server not found error.

 

[charlie1]

"Post-exertional malaise: symptoms profoundly worsen hours or days after physical or mental exertion, leaving an individual very incapacitated for a few days, or even weeks, after this exertion."

However, I am not sure if that reads as clearly as the original.

If you're trying to keep it short, could this work -
Post-exertional malaise : profound symptoms may occur immediately after physical/mental activity or may be delayed hours to days leaving an individual incapacitated indefinitely after this exertion."

 

[Hip]

@oceiv
Thanks for pointing out the broken co-cure link.

The co-cure ME/CFS doctor list can be found here on the Wayback Machine Internet archive. I have updated the roadmap now with this link.

Regarding the post-exertional-malaise description in the roadmap: generally, the idea is not overwhelm the reader with too much information, so the description are kept short and sweet; the roadmap is aimed at providing beginners with a rapid overview of some of the main tests and treatments available for ME/CFS. It's so a new ME/CFS patient can quickly survey the medical treatment scene. But when you want more in depth info on a particular area, you'll need to follow some of the links given in the roadmap, or start Google searching for that info.

If you're trying to keep it short, could this work -
Post-exertional malaise : profound symptoms may occur immediately after physical/mental activity or may be delayed hours to days leaving an individual incapacitated indefinitely after this exertion."

That't not bad, charlie1, thanks. I'll have look at that tomorrow.

 

[oceiv]

Thanks @Hip for the wayback link. I had been trying to find a doc I remembered seeing on the list.

Understood about the brevity. The two points I was adding were 1) PEM may start during activity. 2) PEM varies. When my illness started, I would not have thought PEM applied to me because it is emphasized as post-activity. When I got diagnosed, I finally found out I need to stop activity immediately if I start having PEM. This strategy reduced my severe pain dramatically. This principle helped me, so it might help others who start PEM during activity. Here's a more brief suggestion including those two concepts and based on yours and @charlie1 's versions, if you like. If not, no problem.

Post-exertional malaise: profoundly-worsened symptoms may occur during/immediately after physical/mental exertion, may start hours to days afterwards and leave an individual incapacitated for varied durations."

 

[charlie1]

@oceiv , you do make a point because yes, symptoms can and often do increase during the exertion. But I would think that's simply part of our disease symptom make-up. I suppose it comes down to semantics but since 'post' means after, I think that by including 'during' exertion in the definition of PEM, the reader new to CFS/ME may get confused as it doesn't seem to make sense to use 'during' and post to mean the same thing. Just my opinion
Anyway @Hip, this is a tough one!

 

[Hip]

Thanks @Hip for the wayback link. I had been trying to find a doc I remembered seeing on the list.

Understood about the brevity. The two points I was adding were 1) PEM may start during activity. 2) PEM varies. When my illness started, I would not have thought PEM applied to me because it is emphasized as post-activity. When I got diagnosed, I finally found out I need to stop activity immediately if I start having PEM. This strategy reduced my severe pain dramatically. This principle helped me, so it might help others who start PEM during activity. Here's a more brief suggestion including those two concepts and based on yours and @charlie1 's versions, if you like. If not, no problem.

Post-exertional malaise: profoundly-worsened symptoms may occur during/immediately after physical/mental exertion, may start hours to days afterwards and leave an individual incapacitated for varied durations."

That's a pretty good suggestion also. Thanks very much for your efforts.

The only thing about PEM appearing during the exertion is that this is not mentioned in the ICC, so it's probably best to stick to what is said in these authoritative sources. Though certainly I have read many accounts of PEM appearing during the exertion, especially if the exertion goes on for long enough.

Anyway, for the moment I changed it to the following, which just about fits in the box:

Post-exertional malaise: physical or mental exertion triggers a state of profoundly worsened symptoms. This appears right after the exertion, or hours or days later. This state then lasts days or weeks.

I think that's clearer and better than the original, so thanks guys for these suggestions for improvement.

 

[halcyon]

The only thing about PEM appearing during the exertion is that this is not mentioned in the ICC, so it's probably best to stick to what is said in these authoritative sources. Though certainly I have read many accounts of PEM appearing during the exertion, especially if the exertion goes on for long enough.

The ICC primer has a sidebar that describes PENE as immediate or delayed (page 2), but obviously the 'P' is for post, so it's expected to describe what occurs after exertion. I think the change listed captures this well.

It's clear that we have both post exertional malaise as well as exertion intolerance as two distinct issues. The ICC primer lists aspects of the latter on page 3.

 

[Hip]

The ICC primer has a sidebar that describes PENE as immediate or delayed (page 2), but obviously the 'P' is for post, so it's expected to describe what occurs after exertion. I think the change listed captures this well.

It's clear that we have both post exertional malaise as well as exertion intolerance as two distinct issues. The ICC primer lists aspects of the latter on page 3.

That's interesting, @halcyon. Could be because my brain often seems half blind, but I could not find this info on exertion intolerance in the ICC. Unless you referring to the Energy Production Impairments detailed on page 6 of the ICC.

 

[halcyon]

That's interesting, @halcyon. Could be because my brain often seems half blind, but I could not find this info on exertion intolerance in the ICC. Unless you referring to the Energy Production Impairments detailed on page 6 of the ICC.

No, on page 3 the table that lists the response to exercise, comparing the normal response to ME patients.

 

[Hip]

No, on page 3 the table that lists the response to exercise, comparing the normal response to ME patients.

Sorry, I ignored the table on page 3 at first, as it comes under the Post-Exertional Neuroimmune Exhaustion (PENE) section; but as you say, many items in the table are to do with the immediate effects of exercise, rather than to do with delayed PEM/PENE effects.

 

[oceiv]

@Hip @halcyon Thanks for looking into it and @charlie1 thanks for the input. I now understand that my presentation of PEM is rarer even than I thought. Over the years, I do recall seeing accounts of other patients having my timing of PEM onset, but I knew they weren't the majority. My CFS/ME specialist seemed to recognize my symptoms, gave me relevant advice and the advice worked. I do have classic PEM sometimes, but more often have onset during activity. I've looked at the symptoms of PENE, exercise intolerance and the table on page 3. Exercise intolerance doesn't describe what I get. All of the PEM descriptions I've read capture some or all of my PEM symptoms. I seem to fit the PENE criteria, too. Except for the "post" part, which admittedly is a major part of the classic PEM/PENE descriptions. I discussed the issue further in the PEM thread here and here, if others are interested.

If any of you come across another account of PEM like mine, please PM me.

 

[paolo]

Hi, very well done. I'm trying to do the same work, in Italian.

I would like to ask why you (as well as J Montoya) consider a borrelia infection to be something else from CFS, while you consider HHV6 as a manifestation of CFS/ME. I would say that if chronic borrelia is not CFS, then chronic HHV6 is not CFS as well.

It seems to me that you did not consider some envariomental factors such as heavy metals exposure.

Your description of chronic Lyme is CDC oriented, but that is only one possible way to describe this illness. I would suggest you to consider also the descriptions of other authors, as S Donta and B Fallon, and you will find that chronic Lyme has the same identical features of CFS, in many cases, without joints swelling, for istance.

Moreover testing with double tiers procedure (Elisa + western blot) is not as reliable as you say. This is well known and documented. Many Lyme patients have negative sierology, and still have positive PCR. You can easly find pubblications on this topic in Pub Med.

Congratulations! I'm very admired.

 

[Hip]

Hi paolo,

I am pleased you like the ME/CFS roadmap.

It would great if you write a similar document in Italian. I think there is a strong need to make patients aware of the medical treatments that are available for ME/CFS, because in so many countries (particularly the UK), ME/CFS is still often considered a psychogenic disease, so that patients are then given inappropriate psychological treatments, such as cognitive behavioral therapy (CBT), rather than treatments that address the underlying biology of the disease.

You may be interested in these documents if you are writing an Italian ME/CFS treatment guide:

ME/CFS Treatment Resource Guide for Practitioners, A. Martin Lerner

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management: The Basics and Beyond, Daniel Peterson

It seems to me that you did not consider some envariomental factors such as heavy metals exposure.

I did consider heavy metals, but I could find no evidence that heavy metals such as mercury are linked to ME/CFS. There are no studies showing higher levels of mercury in ME/CFS, nor are there any studies showing that chelation improves ME/CFS. And I have not seen any good anecdotal reports of chelation improving ME/CFS (but if you know of any evidence, please let me know).

The idea is to only include treatments in the roadmap that are known to help ME/CFS. I don't want to send ME/CFS patients on a wild goose chase (ie, pursuit of something that will not be helpful). If any patient wants to experiment with chelation or mercury dental amalgams removal themselves, that's fine, but there is no evidence I know of that suggests this will help. I had my mercury dental amalgams removed purely as a precaution; however, I wouldn't want to say in the roadmap that is a recommended path of action.

I have included all the environmental risk factors for developing ME/CFS I could find. The main one seems to be significant pesticide exposure (such as found in farmers using "sheep dip" organophosphate treatment for sheep), which some studies found increases the risk of ME/CFS by 4 times. Mold exposure is also linked to increased ME/CFS risk, but there is less evidence for this.

Some ME/CFS doctors suggested that tung oil exposure is a risk factor for ME/CFS, so that is included in the roadmap.

I would like to ask why you (as well as J Montoya) consider a borrelia infection to be something else from CFS, while you consider HHV6 as a manifestation of CFS/ME. I would say that if chronic borrelia is not CFS, then chronic HHV6 is not CFS as well.
...
Your description of chronic Lyme is CDC oriented, but that is only one possible way to describe this illness. I would suggest you to consider also the descriptions of other authors, as S Donta and B Fallon, and you will find that chronic Lyme has the same identical features of CFS, in many cases, without joints swelling, for istance.

Discussion on the great similarity between Lyme and ME/CFS sometimes takes place on this forum, and some people suggest that ME/CFS and Lyme are the same disease.

Certainly I would think that whatever the mechanism is in ME/CFS that leads to brain fog and fatigue, this same mechanism may be present in Lyme disease too. And likely present in other fatiguing conditions such as chronic hepatitis C virus infection.

However, there are certain symptoms of Lyme that you do not find in ME/CFS. For example, Bell's palsy can occur in Lyme, but not normally in ME/CFS. Arthritis can occur in Lyme, particularly in the knees, whereas in ME/CFS, if there are joint pains, they are arthralgia rather than arthritis. And in ME/CFS the arthralgia will often migrate from one joint to another.

It is also not entirely clear whether Lyme patients suffer from post-exertional malaise (PEM), though some say they do. PEM is a mandatory symptom in the stricter definitions of ME/CFS such as the CCC or ICC definitions.

And there may be differences in NK function: in Lyme patients, I have seen some reports of low numbers of NK cells; whereas in ME/CFS the number of NK cells is normal, but their activation is low.

I am not against the idea that Lyme might one day be classified as a form of ME/CFS, but at present few medical authorities view it like this, so the roadmap just reflects this.

Moreover testing with double tiers procedure (Elisa + western blot) is not as reliable as you say. This is well known and documented. Many Lyme patients have negative sierology, and still have positive PCR. You can easly find pubblications on this topic in Pub Med.

The CDC test for Lyme is a more conservative one (less sensitivity, more specificity †): if you test positive, then you have Lyme to a good degree of certainty. Such conservative testing is important in say research studies, where you want to make sure that all your cohort do indeed have Lyme disease.

Other Lyme tests can be more "speculative" (more sensitivity, less specificity †): if you test positive, you might well have Lyme, but there also is a good chance you may not. These more speculative tests might useful for patients who don't mind the possibility that a positive result may be wrong, and on testing positive will go ahead and try some of the Lyme treatments anyway, and see if they help or not. Which can be a good idea.

I have heard stories of patients that were Lyme negative by the CDC test, but positive by other more speculative tests, and then gained benefit from Lyme treatments. So there is definitely a good argument for using one of the more speculative tests if you are an individual patient.

However, the roadmap does not really cover the intricacies of Lyme testing. I am an ME/CFS patient, not a Lyme patient, so unfortunately I don't really know that much about Lyme (I live in a part of the UK where there is a very low Lyme risk, and my ME/CFS was clearly precipitated by a viral infection which started as a sore throat). It's often only when you have first hand experience with a disease like Lyme, ME/CFS or fibromyalgia that you really understand it. Was only able to create this roadmap because of all my reading about tests and treatments for ME/CFS.

† Sensitivity is the proportion of people with the disease who have a positive test result. Specificity is the proportion of people without the disease who have a negative test result.

 

[paolo]

Hi paolo,

I am pleased you like the ME/CFS roadmap.

It would great if you write a similar document in Italian. I think there is a strong need to make patients aware of the medical treatments that are available for ME/CFS, because in so many countries (particularly the UK), ME/CFS is still often considered a psychogenic disease, so that patients are then given inappropriate psychological treatments, such as cognitive behavioral therapy (CBT), rather than treatments that address the underlying biology of the disease.

You may be interested in these documents if you are writing an Italian ME/CFS treatment guide:

ME/CFS Treatment Resource Guide for Practitioners, A. Martin Lerner

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management: The Basics and Beyond, Daniel Peterson

Thanks so much for your reply, and for these useful documents you shared by Peterson and Lerner.

I agree with you, there is a enormous need of informations about tests and treatments for this disease. Your work is really simply to use, and still well documented.

 

[paolo]

And there may be differences in NK function: in Lyme patients, I have seen some reports of low numbers of NK cells; whereas in ME/CFS the number of NK cells is normal, but their activation is low.

If you consider the sub popoulation CD3- CD 56+ we have that it is documented a low level both in Lyme disease (Katchar, Dourin, Steere 2013) and in CFS (Masuda, Nozoe et al. 1994). In Lyme disease has been recognized that also the sub popoulation CD 3- CD57+ is low, but I don't know if that sub popoulation has been evalutated in CFS.