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

[Hip]

My idea is to duplicate part of roadmap for this new section. I want it to include "conditions" that are not hard to diagnose or can be diagnosed at home: Varicella zoster virus reactivation, Irritable bowel syndrome, POTS, Pesticide exposure, Physical trauma (eg: car accident), Sinusitis, Ciguatoxin exposure, Meningitis. I don't know enough about these to say exactly witch conditions to select.

OK, I follow what you are saying. I will have to think about it when I have a clearer head, as I am bit brain fogged at present.

In the roadmap, tests for factors that are the most commonly found in ME/CFS patients are prioritized (placed closer to the top of the roadmap). The reason is that is that it makes sense for patients to consider the most common factors first, as these will be the ones found in majority of patients.

This is why the main viruses found in ME/CFS are listed first, as nearly all ME/CFS patients (I would estimate 99%) will have an infection with one or more of these viruses, and some lucky patients can make major improvements if they treat these viral infections.

Conditions like sinusitis or jaw bone cavitation infection are very rare causes of ME/CFS, which is why they are placed at the bottom of the roadmap. I have been on this forum for around 10 years, and I have only seen I think 2 or 3 cases of jaw bone cavitation ME/CFS. I don't think I have ever seen a case of ME/CFS caused by sinusitis, though sinusitis may worsen ME/CFS symptoms.

Thus it would make no sense for the majority of ME/CFS patients to test for sinusitis or jaw bone cavitation infection to begin with, because 99.9% of ME/CFS patients will not have these.



What I have done for the moment is added to the bottom of the mini roadmap a list of all the medical conditions and factors address in the full roadmap. That list hopefully gives readers a taste of things to come.

It's more readable, but I just realized the red to orange and then green to blue progression makes me unconsciously perceive first half of the map as MUCH more important that the other half(( Almost to the point where things listed under first half is bad and things listed under second half and second is good...
changing colors to: 1 (#6F8E73) 2 (#634469) 3 (#066865) 4 (#958556) will stop this...

Thanks for suggesting those alternative colors. I tried them, but I don't think they are obvious and distinct enough; they don't clearly distinguish between the sections.

The first half of the roadmap is much more important that the second half for the vast majority of patients. So that's why I chose red for the first section. I would estimate that 99% of patients will find answers for their problems in the sections round 1, round 2 and the General Therapies section. I imagine that only about 1% of patients will find answers for their problems in round 3 or 4.

One of the problems with the roadmap I think is that people do not take viral testing seriously, especially enterovirus testing, which very few ME/CFS patients get, yet there are some treatments for enterovirus, like oxymatrine, Epivir, tenofovir, which do work for some lucky patients. In spite of placing enterovirus as the very first box in the roadmap, people just ignore it. I wish I was able to get people to pay more attention to enterovirus.

If you have any suggestions regarding how to make people more aware of the enterovirus section, please let me know.

Anyway, thanks very much for your suggestions and feedback; this always helps improve the roadmap.

 

[Hip]

I still think sinusitis should be placed much higher on the list.

If you can show me some evidence that treating sinusitis often leads to substantial improvements in ME/CFS symptoms I can consider moving this higher up in the roadmap. Do you have any links to ME/CFS patient improvement stories from sinus treatments? By improvement stories, I mean similar to those lists in this post.

You say sinusitis is so important that should be placed at the top of the roadmap; so presumably you have seen lots of cases where sinusitis treatment has resulted in great improvement in ME/CFS patients. Any links to such improvement stories will be of interest to me, in order to gauge the significance. I don't remember seeing stories like this on PR, but maybe I just missed them.


Equally, do you know any ME/CFS specialist doctors who focus on sinus treatments? We know there are many ME/CFS doctors who focus on antiviral treatment, gut treatment, treatment of POTS, hormonal treatment, etc. But I have not come across one which focuses on sinusitis treatment.

Do you know of any stories on the forum of a sinusitis treatment given by an ME/CFS doctor which resulted in great benefit to the patient?


If you think sinusitis is very important, you might also like to ask the board to add a sinusitis forum on Phoenix Rising. There are PR forums on many subjects, but not one on sinusitis. If you have this evidence that sinusitis is very significant in ME/CFS - evidence which indicates sinusitis should be a top priority - I am sure the board will happy to oblige.

You might also like to edit the MEpedia sinusitis page (you need to provide studies to back up your statements though), because there is nothing on that page which indicates that sinusitis is an important issue in ME/CFS.

While some may find your roadmap helpful, I think it is misleading in some respects.

Can you list these various ways that you think the roadmap is misleading? I am always looking for ways to improve it.

I think your lack of medical training/experience creates problems.

What sort of problems do you think my lack of medical training/experience creates? There are several medical professionals on Phoenix Rising, so if you think consulting with one of those will help improve the roadmap, please do point out the problem areas of the roadmap, and I can ask these medical professionals for assistance in fixing them.

 

[Hipsman]

Thanks for suggesting those alternative colors. I tried them, but I don't think they are obvious and distinct enough; they don't clearly distinguish between the sections.

I overreacted that time, sorry. I still think that 3 round color could be altered a bit not to resemble an "easy difficulty". I'll leave alternative color choice to you.

One of the problems with the roadmap I think is that people do not take viral testing seriously, especially enterovirus testing, which very few ME/CFS patients get, yet there are some treatments for enterovirus, like oxymatrine, Epivir, tenofovir, which do work for some lucky patients. In spite of placing enterovirus as the very first box in the roadmap, people just ignore it. I wish I was able to get people to pay more attention to enterovirus.

One idea I have is to put in 1ST ROUND: Tests title approximate % of ME/CFS causes that are associated with those causes or under the title approximate % of ME/CFS causes that are associated with enterovirus.

 

[Hip]

One idea I have is to put in 1ST ROUND: Tests title approximate % of ME/CFS causes that are associated with those causes or under the title approximate % of ME/CFS causes that are associated with enterovirus.

That's a good idea. Though I would have to run a poll on the forum to determine the percentage of patients with each virus. But nearly all patients will have elevated antibody levels to either enteroviruses or herpesviruses. Even those with a vaccination trigger to their ME/CFS often have these elevated antibody levels.

For the moment, I've added this phrase to the beginning of Round 1:

Most ME/CFS patients have elevated antibody levels to one or more of the following pathogens; blood tests for these various pathogens allows you to select the appropriate antiviral or antibacterial treatment.

 

[Cipher]

@Hip. Nutcracker syndrome might be something to consider adding to the roadmap?

 

[Hip]

@Hip. Nutcracker syndrome might be something to consider adding to the roadmap?

Thanks for the suggestion. It's interesting that this NIH article says nutcracker syndrome can cause chronic fatigue, or chronic fatigue syndrome.

However there are dozens of diseases which can cause ME/CFS-like symptoms, too many to detail in the roadmap, apart from the most common ones, like say hypothyroidism. In the roadmap, at the bottom of the section entitled "Ruling Out Diseases With Similar Symptoms", there are some links to pages which list dozens of ME/CFS-like illnesses. One of those pages is this Phoenix Rising thread, so you could post a small note about nutcracker syndrome and its symptoms there.

 

[Cipher]

Thanks for the suggestion. It's interesting that this NIH article says nutcracker syndrome can cause chronic fatigue, or chronic fatigue syndrome.

However there are dozens of diseases which can cause ME/CFS-like symptoms, too many to detail in the roadmap, apart from the most common ones, like say hypothyroidism. In the roadmap, at the bottom of the section entitled "Ruling Out Diseases With Similar Symptoms", there are some links to pages which list dozens of ME/CFS-like illnesses. One of those pages is this Phoenix Rising thread, so you could post a small note about nutcracker syndrome and its symptoms there.

I think nutcracker syndrome belongs more in the ME/CFS category than the ME/CFS-like category. There are several case-reports available of patients diagnosed with CFS where the cause was nutcracker syndrome, with resolution of symptoms after surgery, much like CCI/AAI. I will list the ones I've found below:

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A Tough Nut to Crack: Chronic Fatigue Syndrome and Abdominal Pain Attributed to Nutcracker Syndrome

DOI: 10.15761/IMC.1000101

Abstract


Nutcracker phenomenon refers to entrapment of the left renal vein between the superior mesenteric artery and aorta. This can result in elevated left renal vein pressure and reduced renal perfusion. Nutcracker syndrome, which refers to symptoms associated with the above phenomenon, usually presents with acute onset hematuria and abdominal pain, but more rarely, may present as chronic fatigue syndrome. Here, we present a case of a 24-year-old male with a seven-year history of chronic fatigue syndrome, which was subsequently found to have imaging characteristics consistent with nutcracker phenomenon. His fatigue markedly improved after insertion of a left renal vein stent.

Later in the same paper:

Chronic fatigue syndrome (CFS) can be a debilitating condition characterized by persistent fatigue and an impairment in ability to engage in daily activities for more than six months (three months in children and adolescents), with post-exertional malaise, unrefreshing sleep, and must be associated with either cognitive impairment or orthostatic intolerance.

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Does severe nutcracker phenomenon cause pediatric chronic fatigue?

Takahashi Y1, Ohta S, Sano A, Kuroda Y, Kaji Y, Matsuki M, Matsuo M.

1 Department of Pediatrics, Tenri Hospital, Nara, Japan.
Abstract

BACKGROUND:

In the past five years we experienced 9 fatigued disabled children who were intermittently or persistently absent from school.
PATIENTS:

They had been suspected to be burdened with psychosomatic disorders, having orthostatic hypotension, postural tachycardia, or other autonomic dysfunction symptoms.
RESULTS:

Investigating the cause of moderate orthostatic proteinuria in some of them, we found by chance severe typical nutcracker phenomenon (NC), which was present in all 9 children complaining of chronic fatigue.
CONCLUSION:

Their symptoms filled the criteria of chronic fatigue syndrome or idiopathic chronic fatigue (CFS/CF). An association between severe NC and autonomic dysfunction symptoms in children with CFS/CF has been presented.

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The full-text is unavailable, so a bit more detail is available in another paper:

Takahashi et al. (4) also described 9 children with orthostatic dysregulation who were intermittently or persistently absent from school. Also, the patients complained of various combinations of symptoms, such as chronic fatigue, headache, lightheadedness, dizziness, abdominal pain, unrefreshing sleep, muscle pain, joint pain, sore throat, low-grade fever, afebrile chills in hot summer and depression, which were compatible with the criteria of a disease entity of chronic fatigue syndrome or idiopathic chronic fatigue. Takahashi et al. speculated that severe congestion in the adrenal medulla caused by left renal venous hypertension might derange a complex set of central neural connections that controls the sympathoadrenal system. Alternatively, they suggested that overproduction or night retention of catecholamines might be responsible for these symptoms.

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Another case-report from the same author (Takahashi):

Takahashi et al. (5) reported the case of 13-year-old girl who had been monitored because of a school phobia associated with orthostatic hypotension, tachycardia and chronic fatigue syndrome. This patient was successfully treated with transluminal balloon angioplasty of the compressed left renal vein between the aorta and superior mesenteric artery. Chronic fatigue syndrome and autonomic dysfunction symptoms also improved after catheter manipulation, which suggests that there could be a link between nutcracker syndrome and these autonomic symptoms.

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(Diagnosed using Fukuda criteria according to full-text written in Korean)

A Case of Nutcracker Syndrome Associated with Orthostatic Proteinuria and Idiopathic Chronic Fatigue in a Child

Ji Hyun Juhn, Byung Won Yoo, Jae Seung Lee, Myung Jun Kim

ABSTRACT

The nutcracker syndrome is the congestion of left renal vein due to the compression of left renal vein by the aorta and the superior mesenteric artery and has been known as tile cause of hematuria with or without left renal flank pain, mild to moderate proteinuria and orthostatic proteinuria. We present here one case of 13.5 year of girl has severe typical nutcracker syndrome with orthostatic protinuria and idiopathic chronic fatigue. (J. Korean Soc Pediatr Nephrol 5 . 64- 8, 2001)

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The study titled "Does severe nutcracker phenomenon cause pediatric chronic fatigue?", where all 9 patients with CFS had nutcracker syndrome indicates that a potentially significant percentage of ME/CFS patients might have nutcracker syndrome to blame for their symptoms. I think it deserves bigger attention in the ME/CFS sphere with these case-reports in mind, especially when both ME/CFS and nutcracker syndrome is strongly linked to POTS and OI. The thread you linked to earlier doesn't have much impact compared to your roadmap. I will try to create a nutcracker syndrome-page on me-pedia some time in the future so people can find information about it easier.

 

[Hip]

I think nutcracker syndrome belongs more in the ME/CFS category than the ME/CFS-like category.

Possibly.

Looking on this forum, I could not find one ME/CFS patient diagnosed with nutcracker syndrome, so it would seem rare (unless doctors are missing it).

 

[Cipher]

Possibly.

Looking on this forum, I could not find one ME/CFS patient diagnosed with nutcracker syndrome, so it would seem rare (unless doctors are missing it).

It seems to be a severely under-diagnosed condition. Many websites states that nutcracker syndrome (also called renal vein entrapment syndrome) is a rare disease, but this is likely not true at all. If we take varicocele as an example; it's pretty common, about 15 % of all men globally is affected. Nutcracker syndrome seems to be a very common cause of varicocele, with numbers ranging from 30 % to 100 % of varicocele patients having nutcracker syndrome. So about 4.5 % to 15 % of the male population probably have nutcracker syndrome (or nutcracker phenomenon), but the big majority aren't diagnosed. One reason for this, apart from the general medical ignorance/stupidity we are so very familiar with, is that nutcracker syndrome is, much like CCI/AAI, not easily diagnosed. Here's a short summary of the diagnostic procedures that Dr. Takahashi, the Japanese researcher from the CFS-studies I linked to above uses:

Source

The methods used to diagnose nutcracker phenomenon include Doppler US, MRI and three-dimensional helical computed tomography. Dr. Takahashi (personal communication, September 8, 2002) explains the procedures for testing as follows: Conventional ultrasound requires patients to be examined for left renal vein obstruction in 4 positions: supine, semisitting, upright and prone. Nonvisualization of the left renal vein lumen or absence of the left renal vein wall between the aorta and superior mesenteric artery is regarded as signifying left renal vein obstruction. Doppler color flow imaging can be used to locate a blue-colored blood stream flowing to the dorsal direction. This is a collateral vein flowing from the left renal vein into the paravertebral vein. With MRI, oblique coronal images along the left renal vein, and also axial images, are recommended to visualize the collateral veins around the left renal vein

 

[Hip]

It seems to be a severely under-diagnosed condition. Many websites states that nutcracker syndrome (also called renal vein entrapment syndrome) is a rare disease, but this is likely not true at all. If we take varicocele as an example; it's pretty common, about 15 % of all men globally is affected. Nutcracker syndrome seems to be a very common cause of varicocele, with numbers ranging from 30 % to 100 % of varicocele patients having nutcracker syndrome. So about 4.5 % to 15 % of the male population probably have nutcracker syndrome (or nutcracker phenomenon), but the big majority aren't diagnosed.

Very interesting. If your hunch is right that nutcracker syndrome could account for some cases of ME/CFS, this information should be circulated widely (my roadmap is actually not read very much at all; web stats indicate it only gets around 5 to 10 views per day).

I will have to spend a bit of time investigating nutcracker syndrome, so that I can get a better understanding. I'd never heard of it previously. I usually only add things to the roadmap once I have understood them to a reasonable degree (to ensure that the info I write is correct).

 

[Judee]

While I don't have the energy to create my own Roadmap, you do, and unfortunately, I think your lack of medical training/experience creates problems.

@CFS_for_19_years, I don't think it's fair to assume any ME/CFS patient here has any more energy than anyone else. It may have taken him months to do all that work. You don't know the price he paid in PEM, nor do I.

Plus, I had an excellent allergist's "medical training/experience" to help me. After years and years of getting sinus infection after sinus infection, we completely eliminate them.

It's to the point that I almost never have use a Kleenex because my sinuses are now completely clear most all the time. I had to work hard and permanently give up a lot of foods and clean up my home environment something other allergy suffers in my family are not willing to do. Unfortunately, they still get the infections regularly so maybe I should still buy stock in Kimberly Clark as I joked about doing all those years ago.

That being said, even though I went to the allergist for 11 years and he implied that he would help me with the ME/CFS, I still didn't get any better on that front. I kept going to him thinking he would help but in fact, I finally realized that some of the things he recommended for the ME/CFS were actually making it worse.

I think most people on PR recognize that Hip is not a medical "expert." We see him struggling along with this disease and doing his best to help himself and others. I said on another post here recently that I think people who truly experience ME/CFS develop an extraordinary sense of empathy for others who have this awful disease. Deep down, it changes people's way of thinking so that we patients never want to add to the burdens of others because we understand what a heavy load that can be.

I'm a grateful for what Hip has done with his roadmap. I put myself in his place mentally and imagine what a difficult task it was to put that all together...omgoodness, just the thought exhausts me...and yet, he cared enough to use up some of his precious allotment of energy to try to help other patients.

I'm afraid that you and some others here may be guilty of doing what all the doctors I've dealt with have done. They love to have a "pet" diagnosis and suspect that every patient they see has it. For example, for a long time I noticed that my PCP's pet diagnosis was acid reflux. I think every one of his patients for at least a whole decade got "acid reflux" listed somewhere in their chart--myself included.

When doctors do that they miss so much. My allergist had his pets too and he was convinced that they caused my ME/CFS but really they only caused some ME/CFS-like symptoms like added fatigue, headaches, IBS, sinusitis, etc. and the further along we got with treatment the more frustrated he became and I at least began to realized that he wasn't getting it. It was because as you said "his priorities" were different than this disease's and he was locking himself into one way of thinking. Unfortunately for me, he could not even get to the point of admitting to himself that he doesn't truly understand what ME/CFS is, well because even after all this time does anyone really?

So, I thank God that Hip does not have a doctor's priorities but an ME/CFS patient's priorities and honestly, I don't know how anyone can dredge up energy to find fault with that.

 

[Cipher]

Very interesting. If your hunch is right that nutcracker syndrome could account for some cases of ME/CFS, this information should be circulated widely (my roadmap is actually not read very much at all; web stats indicate it only gets around 5 to 10 views per day).

I will have to spend a bit of time investigating nutcracker syndrome, so that I can get a better understanding. I'd never heard of it previously. I usually only add things to the roadmap once I have understood them to a reasonable degree (to ensure that the info I write is correct).

I just wanted to say that I've now come around to write a me-pedia page regarding nutcracker phenomenon.

 

[Hip]

I just wanted to say that I've now come around to write a me-pedia page regarding nutcracker phenomenon.

Wow, that's an amazing page! Very comprehensive. Fabulous work, Cipher!

 

[Swim15]

Has there been any update on the Rega compounds?

 

[Hip]

Has there been any update on the Rega compounds?

I answered this question in the Rega thread.

 

[RobeAnJa]

That roadmap is great! But do you have any suggestions where I should start as I suspect Coronavirus as the trigger? Would it be likely to trigger another virus? I can’t find any useful information about ME/CFS from the 2003 outbreak of SARS.

 

[Hip]

But do you have any suggestions where I should start as I suspect Coronavirus as the trigger?

You could look at some of the treatments which are not virus-specific, which include B12 methylcobalamin injections and low-dose naltrexone. These are found in the section General Therapies for ME/CFS.

Obviously there's not much in the way of antivirals for coronavirus, but I wonder if the immune booster oxymatrine might help for coronavirus. Dr Chia normally uses this for enterovirus-associated ME/CFS; however, it's not inconceivable oxymatrine might help for coronavirus-associated ME/CFS also.

I am not aware of anyone with long COVID who has tried this though. But enterovirus is the closest ME/CFS virus to coronavirus: both are classified as positive-sense single-stranded RNA viruses.


Often ME/CFS patients may have active viral infections with more than one virus, so it may be worth considering viral testing for other viruses linked to ME/CFS, which include the herpesviruses: Epstein-Barr virus, cytomegalovirus, HHV-6.

In my case for example, I am reasonably sure my ME/CFS was triggered by the enterovirus named coxsackievirus B4, and I have high antibody levels to this virus. But I also have high antibody levels to cytomegalovirus. So I may have already had cytomegalovirus in my body, and it reactivated as a result of the immune abnormalities of ME/CFS. There are antiviral treatments for these herpesviruses, and they sometimes help ME/CFS.

 

[RobeAnJa]

Thank you @Hip ! Very helpful.

 

[YellowStranger]

Thank you @Hip ! Very helpful.

Yes, thank you! I looked at a lot of things from a different angle...

 

[Emmarose47]

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.

Interesting
I have chronic sinusitis ..I don't get the on signs of infection anymore but do get v congested and need to steam and salt ...
I take an anti hist as I think I'm allergic to dust ...also I must buy a new mattress ...
Maybe a naturopath could be a good step.for me