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

[Sushi]

...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?

Look here, and notice the red thumbtack!

Sushi

 

[Gingergrrl]

@Sushi oops, didn't see that?!!

 

[Hip]

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.

Thanks Soundthealarm21. A proofreading will be most welcomed. If you do see any grammar, spelling or typo mistakes in the text, please let me know. Since getting ME/CFS, my ADHD symptoms got much worse, and so I find it really hard to see these mistakes, even if I stare at the text. Brain fog does not help either.

If you do have some good web links for mold testing, etc, please post them, especially reliable sources. I found it difficult to find reliable info on mold illness.

Also, with Dr Joseph Brewer's recent findings of mold toxins in ME/CFS patients, and his new speculations that these mold toxins derive from mold infections within the body (such in the sinus cavities), our whole perspective on mold in ME/CFS might need a major update soon, if his research is validated.

 

[Hip]

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.

You may have a point regarding sinusitis needing to appear earlier in the roadmap. At the moment sinusitis is relegated into the 4th Round Tests towards the end of the document.

Sinusitis is quite common in ME/CFS. The question is though, does treating sinusitis pay dividends as far as ameliorating ME/CFS is concerned?

What I have tried to do is include the more common ME/CFS-associated factors — and the treatments most likely to ameliorate ME/CFS — towards the beginning of the document, and place the less common and rare factors — and treatments least likely to ameliorate ME/CFS — towards the end of the document. Just roughly anyway.

So then the question is: how many ME/CFS patients have noticed an improvement in their ME/CFS after treating their sinusitis? In other words, how likely is it that sinusitis treatment will ameliorate ME/CFS?

I know in my own case, treating my sinusitis seemed to lead to a noticeable reduction in my anxiety symptoms. But in general, how useful is treating sinusitis in terms of making improvements to your ME/CFS?

Anyone have a view on this?

 

[Hip]

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!

On the basis of our discussions on your thread General Survey re: Anti-virals, I updated and expanded the roadmap yesterday to try to more clearly and comprehensively explain the antivirals used for herpes family virus infections. But apart from that, it's pretty much the same roadmap.

I do update it now and then with some new items and info. And there are some parts of the roadmap that are not complete, and need to be attended to.

 

[Soundthealarm21]

If you do have some good web links for mold testing, etc, please post them, especially reliable sources. I found it difficult to find reliable info on mold illness.

Also, with Dr Joseph Brewer's recent findings of mold toxins in ME/CFS patients, and his new speculations that these mold toxins derive from mold infections within the body (such in the sinus cavities), our whole perspective on mold in ME/CFS might need a major update soon, if his research is validated.

@Hip I'll start looking into it tomorrow.

On my first read through there were some misspelled words and incomplete sentences. I'll have a thorough look tomorrow!

 

[heapsreal]

You may have a point regarding sinusitis needing to appear earlier in the roadmap. At the moment sinusitis is relegated into the 4th Round Tests towards the end of the document.

Sinusitis is quite common in ME/CFS. The question is though, does treating sinusitis pay dividends as far as ameliorating ME/CFS is concerned?

What I have tried to do is include the more common ME/CFS-associated factors — and the treatments most likely to ameliorate ME/CFS — towards the beginning of the document, and place the less common and rare factors — and treatments least likely to ameliorate ME/CFS — towards the end of the document. Just roughly anyway.

So then the question is: how many ME/CFS patients have noticed an improvement in their ME/CFS after treating their sinusitis? In other words, how likely is it that sinusitis treatment will ameliorate ME/CFS?

I know in my own case, treating my sinusitis seemed to lead to a noticeable reduction in my anxiety symptoms. But in general, how useful is treating sinusitis in terms of making improvements to your ME/CFS?

Anyone have a view on this?

for me the sinus infections i think were a consequences of our low immune function. I found the sinus infections greatly increased fatigue, headaches and in me caused hypertension eg 160/110, probably the reason for the headaches being so bad. But i also think it depends on which sinuses are infected, frontal sinuses being the hardest to treat.

Staphylococcus aureus is a common cause of chronic sinus infections. My doctor said it was almost pointless testing for the bacterial cause of sinusitis and best to treat with broad spectrum antibiotics. Also we require longer courses of abx, not just the typical 5 to 10 day course, sometimes months?

Theres also issues for some with drainage problems too. Fungal sinisitus is also common in immune suppressed people. ct scan is probably best to help with diagnosing sinus issues as it can pick up inflammation etc Nasal swab to diagnose the bacteria that is the issue isnt accurate as they cant get the swab into the sinuses properly especially the frontal sinuses, all they are able to tell is whats in the nose which isnt always a good indicator of whats in the sinuses.

I guess with all of us what we really need to do is improve our immune function, which would sort out almost all of our infectious issues??

 

[rosie26]

Hip

I will try to read your Roadmap and whole thread properly in the next 2 days - week. I suffered very severe sinusitis at onset amidst all the other very severe symptoms of ME. I would like to comment further once I have carefully read through everything.

Thanks @Hip

 

[xchocoholic]

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

Oops. I can't copy your quote. But what I was saying is different.

Sometimes a different common dx CAN rule out me/cfs but NOT always. Until we have a test for me/cfs someone can have both a common dx like celiac, ms, ataxia, lyme, etc AND me/cfs as long as they meet the ccc criteria. I still have my me/cfs dx.

Tx .. x

 

[Hip]

Hip

I will try to read your Roadmap and whole thread properly in the next 2 days - week. I suffered very severe sinusitis at onset amidst all the other very severe symptoms of ME. I would like to comment further once I have carefully read through everything.

Thanks @Hip

Thanks very much. It will be good to get your views on this subject. Any ideas for improvement in the document are welcomed.

 

[Hip]

Sometimes a different common dx CAN rule out me/cfs but NOT always. Until we have a test for me/cfs someone can have both a common dx like celiac, ms, ataxia, lyme, etc AND me/cfs as long as they meet the ccc criteria. I still have my me/cfs dx.

OK, I see what you are saying.

I guess it is a possibility that you could have both ME/CFS as well as another disease also producing symptoms that closely resemble those of ME/CFS. Though if you had both Lyme and ME/CFS, as far as I can see, it would be almost impossible to know this, because the symptoms are so similar.

The main purpose of the "Ruling Out Other Conditions" section is to try to catch people who have erroneously been diagnosed with ME/CFS when in fact they have something like celiac, hypothyroid, anemia, etc which are very treatable; or Lyme, lupus or hep C, which have different treatments to ME/CFS.

There are cases when patients have been diagnosed with ME/CFS for decades, when they in fact have the treatable condition of celiac. That's quite tragic really, as they then spend years being sick, when they could have been easily treated.

What changes to the wording in the "Ruling Out Other Conditions" section would you suggest?

 

[xchocoholic]

Hi @Hip.

Fwiw, I liked the way I worded it. It makes sense in my head. Lol.

It lets people know that some will recover via treating their common dx but some won't. And if you don't heal, don't worry and don't beat yourself up, because we knew this was possible.

At this time we know that pwcs collect (I can't think of a better word) multiple systemic disorders (neurological, gastrointestinal, respiratory, urological, etc ). Some quicker than others. A virus or pathogen appears to trigger some but not all cases of me/cfs. Hmmm. Maybe only acute viral onset pwcs have multiple systemic disorders. I wouldn't know.

I mention this because I heard from well meaning supporters that the gf diet would cure my me/cfs but it didn't. And while co-existing auto immune disorders are common with celiac no one has stated, to my knowledge, that my me/cfs is an auto immune disease resulting from celiac so it can be dropped. I'm sure it's because there's no test for me/cfs so since I meet the ccc criteria still, this dx can't be dropped. Hey. It's just one more. Lol.

Your document offers clues for what we should be looking for. I'd add more "alternative" pathogens and treatments tho. Candida and parasites come to mind but I'm not versed enough to discuss these.

Tx ... x

Ps. I have pem today so while I see changes I'd like to make I'm too tired.

 

[SOC]

Sometimes a different common dx CAN rule out me/cfs but NOT always. Until we have a test for me/cfs someone can have both a common dx like celiac, ms, ataxia, lyme, etc AND me/cfs as long as they meet the ccc criteria. I still have my me/cfs dx.

I think the point is that in some cases the other condition exists instead of ME/CFS, while in other cases it is comorbid. I believe that the distinction that needs to be made is that if the other condition is treated and the patient no longer has ME/CFS symptoms, then they were misdiagnosed. OTOH, if the other condition is treated and the patient has relief from some symptoms, but still has ME/CFS symptoms, then they likely had both the other condition and ME/CFS.

Anyone with multiple other diagnoses probably has something underlying them all (or multiple misdiagnoses), and the root may well be ME/CFS.

 

[xchocoholic]

Hi @SOC

I was staying away from saying a person was misdiagnosed with me/cfs if their symptoms resolved via treatment for a known cause just in case me/cfs turns out to be the result of an over burdened immune system.

IF ??? Me/cfs is the result of an overburdened immune system then alleviating the burden will allow some pwcs to recover once the burden is lifted.

We see this in celiacs. Imho, Elisabeth Hasselbeck's story is an excellent example of this. She was unable to have children until she eliminated gluten. Now she has 3. Her doctor said her body was too overwhelmed from keeping her alive that it couldn't handle pregnancy. Great story.

Tc .. x

Eta. The NIH states that celiac disease can be confused with cfs, etc. It's on digestive dot niddk dot nih website under celiac disease. Googling nih celiac is the easiest way to find it. It's in the section titled "How is celiac disease diagnosed" .. I found this in 2006 so it's been there awhile.

 

[Soundthealarm21]

@Hip attached is my proofread along with some suggestions. I did not suggest adding content (except for Mold Toxins which I will get to you later) only reorganizing sentences to make them a bit easier to read.

Mistakes are marked in red
Suggestions are marked in green

I hope it is of some help to you

 

[Hip]

@Hip attached is my proofread along with some suggestions. I did not suggest adding content (except for Mold Toxins which I will get to you later) only reorganizing sentences to make them a bit easier to read.
I hope it is of some help to you

Thanks very much indeed for that, Soundthealarm21. I will take a close look at all the corrections and suggestions, and try to assimilate what you have said.

 

[drob31]

Hip, your contribution with this thread is on par with the contributions of Fred Davis and Rich Van K. Simply incredible...

 

[Hip]

Hip, your contribution with this thread is on par with the contributions of Fred Davis and Rich Van K. Simply incredible...

Well thanks for the praise. Though unlike the successful Freddd and RVK protocols, this roadmap is not actually itself improving patients' ME/CFS symptom — though it might do so indirectly by leading patients to effective treatments for ME/CFS.

The roadmap does need a bit more work: someone pointed out to me on the HealClick forum that the roadmap as it stands lacks sections on:
cortisol testing and treatment;
other hormone level testing and treatment;
precise details on testing food intolerance;
and it could do with a section on sleep study testing.

The trouble is, I need to read and properly understand these areas before I can add them to the roadmap.

 

[EnduringAngel]

Just a comment about it, I havent been able to read it all, but I did notice this statment
"Most people with systemic lupus erythematosus (SLE) will have a positive antinuclear antibody test (ANA), but ANA is usually negative in ME/CFS patients. Thus the ANA test is a useful tool to help distinguish SLE from ME/CFS. Up to 50% of SLE patients exhibit a red butterfly rash on the face, which is not found in ME/CFS."

But I do remember reading a book by Dr Hyde in which he said he sees many ME patients who do have a positive ANA. He also says he sees many patients who have a positive HLAb27 with scoliosis of the spine, but no fusing of the spine as seen in ankylosing spondylitis. It was in his latest ME book.

A x

 

[Hip]

Thanks for your input, @EnduringAngel.

It's possible to have a positive ANA in ME/CFS. And some of the common comorbidities of ME/CFS, such as Hashimoto's and Sjögren's often have positive ANA.

However, in general, ME/CFS patients have no high incidences of positive ANA than the normal healthy population (as this study indicates). Approximately 3 to 15% of the normal population will have a positive ANA test.†

So while not perfect, the ANA test is a helpful tool in distinguishing lupus from ME/CFS.

I have now updated the roadmap text to make these issues clearer, so it's good that your brought this up.