Journal of Clinical Medicine Special Issue "CFS/ME: Diagnosis and Treatment" (2021)

Pyrrhus

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In this issue:

Tolerability and Efficacy of s.c. IgG Self-Treatment in ME/CFS Patients with IgG/IgG Subclass Deficiency: A Proof-of-Concept Study
(Scheibenbogen et al., 2021)
https://www.mdpi.com/2077-0383/10/11/2420

Post-Exertional Malaise May Be Related to Central Blood Pressure, Sympathetic Activity and Mental Fatigue in Chronic Fatigue Syndrome Patients
(Kujawski et al., 2021)
https://www.mdpi.com/2077-0383/10/11/2327

Relationship between Cardiopulmonary, Mitochondrial and Autonomic Nervous System Function Improvement after an Individualised Activity Programme upon Chronic Fatigue Syndrome Patients
(Kujawski et al., 2021)
https://www.mdpi.com/2077-0383/10/7/1542

MoCA vs. MMSE of Fibromyalgia Patients: The Possible Role of Dual-Task Tests in Detecting Cognitive Impairment
(Murillo-Garcia et al., 2021)
https://www.mdpi.com/2077-0383/10/1/125

The Prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS Patients: A Meta-Analysis
(Lim et al., 2020)
https://www.mdpi.com/2077-0383/9/12/4040

Systematic Review of Primary Outcome Measurements for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in Randomized Controlled Trials
(Kim et al., 2020)
https://www.mdpi.com/2077-0383/9/11/3463
 

Pyrrhus

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New article:

Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
(Baklund et al., 2021)
https://www.mdpi.com/2077-0383/10/14/3105/htm

Abstract:
Baklund et al 2021 said:
There is a lack of research regarding blood tests within individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and between patients and healthy controls. We aimed to compare results of routine tests between patients and healthy controls.

Data from 149 patients diagnosed with ME/CFS based on clinical and psychiatric evaluation as well as on the DePaul Symptom Questionnaire, and data from 264 healthy controls recruited from blood donors were compared. One-way ANCOVA was conducted to examine differences between ME/CFS patients and healthy controls, adjusting for age and gender.

Patients had higher sedimentation rate (mean difference: 1.38, 95% CI: 0.045 to 2.714), leukocytes (mean difference: 0.59, 95% CI: 0.248 to 0.932), lymphocytes (mean difference: 0.27, 95% CI: 0.145 to 0.395), neutrophils (mean difference: 0.34, 95% CI: 0.0 89 to 0.591), monocytes (mean difference: 0.34, 95% CI: 0.309 to 0.371), ferritin (mean difference: 28.13 95% CI: −1.41 to 57.672), vitamin B12 (mean difference: 83.43, 95% CI: 62.89 to 124.211), calcium (mean difference: 0.02, 95% CI: −0.02 to 0.06), alanine transaminase (ALAT) (mean difference: 3.30, 95% CI: −1.37 to -7.971), low-density lipoproteins (mean difference: 0.45, 95% CI: 0.104 to 0.796), and total proteins (mean difference: 1.53, 95% CI: −0.945 to 4.005) than control subjects.

The patients had lower potassium levels (mean difference: 0.11, 95% CI: 0.056 to 0.164), creatinine (mean difference: 2.60; 95% CI: 0.126 to 5.074) and creatine kinase (CK) (mean difference: 37.57 95% CI: −0.282 to 75.422) compared to the healthy controls. Lower CK and creatinine levels may suggest muscle damage and metabolic abnormalities in ME/CFS patients.
 
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Hope I'm allowed to post this here. Your last article "Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"

I actually found quite fascinating. I recently had whole bloods taken so I read this article and found that it seems all the biomarkers in the study line up with my own blood test results. Which for me was really interesting!! Especially as the cohort sizes are decent.

I'll try to summarise as I'm on my phone but wanted to get a post out on this:

Screenshot_2021-07-17-15-55-10-23_e2d5b3f32b79de1d45acd1fad96fbb0f.jpg


So the study as you can see above did a variety of tests across 149 ME patients and 264 healthy controls.

They broke patients down by illness severity severe/moderate and mild. With a table of there results side by side and it's interesting how the deviations are on the whole small apart from some biomarkers. Of course quantifying the severity of small deviations is another topic altogether.

I guess the standout differences however for me were that creatinine and potassium were slightly lower in ME patients compared to controls but CK (creatinine kinease) was much lower in ME patients Vs controls (especially severe patients - see further down).

Interestingly my CK value was 80 which is more or less in the same ballpark as all ME patients. Whereas healthy controls the average was 121. Now as a mild patient I find it very interesting that I had milder symptoms than I had had in a long time when I got these bloods taken but ultimately my CK value is still roughly ball park for an ME cohort. I wonder if the protocol I am on (Josh's protocol listed in my signature) will ever shift these biomarkers. Off topic for this post. Just an interesting point.

Info about creatinine from my results:

Creatinine is a chemical waste molecule that is generated from normal muscle metabolism. Measurement of this is an indicator of the levels of other waste products in the body. Creatinine is also an accurate marker of kidney function, and may help in diagnosing kidney disease.

CK from my results:

Creatinine kinase (CK) is an enzyme which is necessary for muscle function and is found in the heart and skeletal muscles as well as other tissues. It signifies muscle cell damage and death and is measured to diagnose and monitor muscle damage. CK levels tend to be higher in people with greater muscle mass.

--

I personally see this and the result set for severe moderate and mild patients in this study as a close indicator that actually we've all got the same disease. Which might reinforce the idea that viruses and other pathogens as the years go by could be the culprit behind deterioration and severity? Who knows for sure. But I find it an interesting angle of debate as there has to be a reason why to my knowledge many of us start of mild and then we deteriorate either extremely quickly or incredibly slowly (months Vs decades).

Also I got these blood results the day before my second covid jab and on that day I felt pretty terrific. So I find it interesting as well that how you feel in terms of your ME (no sore throat, no fatigue, PEM blocked, still pacing etc (I felt this good due to the heroes veridai protocol listed in my signature - when I got the covid vaccine all these symptoms reappeared over several weeks)) in my case would seem to have had no effect on the underlying issue causing my ME. I had been on the protocol about 30 days by then.

More analysis by severity:

Severely ill patients had the lowest CK value mean average of 64. Whereas mild patients had a CK value of 88. And healthy controls as I said above had an average of 121. So severely ill patients had a 50% reduction compared to controls.

There's a lot more data here really but I need to write my own results down to see how I'm doing. I like this study I feel like it gives us data to work with instead of a black hole with nothing in it.
 

Boba

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Hope I'm allowed to post this here. Your last article "Evaluating Routine Blood Tests According to Clinical Symptoms and Diagnostic Criteria in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"

I actually found quite fascinating. I recently had whole bloods taken so I read this article and found that it seems all the biomarkers in the study line up with my own blood test results. Which for me was really interesting!! Especially as the cohort sizes are decent.

I'll try to summarise as I'm on my phone but wanted to get a post out on this:

View attachment 43964

So the study as you can see above did a variety of tests across 149 ME patients and 264 healthy controls.

They broke patients down by illness severity severe/moderate and mild. With a table of there results side by side and it's interesting how the deviations are on the whole small apart from some biomarkers. Of course quantifying the severity of small deviations is another topic altogether.

I guess the standout differences however for me were that creatinine and potassium were slightly lower in ME patients compared to controls but CK (creatinine kinease) was much lower in ME patients Vs controls (especially severe patients - see further down).

Interestingly my CK value was 80 which is more or less in the same ballpark as all ME patients. Whereas healthy controls the average was 121. Now as a mild patient I find it very interesting that I had milder symptoms than I had had in a long time when I got these bloods taken but ultimately my CK value is still roughly ball park for an ME cohort. I wonder if the protocol I am on (Josh's protocol listed in my signature) will ever shift these biomarkers. Off topic for this post. Just an interesting point.

Info about creatinine from my results:

Creatinine is a chemical waste molecule that is generated from normal muscle metabolism. Measurement of this is an indicator of the levels of other waste products in the body. Creatinine is also an accurate marker of kidney function, and may help in diagnosing kidney disease.

CK from my results:

Creatinine kinase (CK) is an enzyme which is necessary for muscle function and is found in the heart and skeletal muscles as well as other tissues. It signifies muscle cell damage and death and is measured to diagnose and monitor muscle damage. CK levels tend to be higher in people with greater muscle mass.

--

I personally see this and the result set for severe moderate and mild patients in this study as a close indicator that actually we've all got the same disease. Which might reinforce the idea that viruses and other pathogens as the years go by could be the culprit behind deterioration and severity? Who knows for sure. But I find it an interesting angle of debate as there has to be a reason why to my knowledge many of us start of mild and then we deteriorate either extremely quickly or incredibly slowly (months Vs decades).

Also I got these blood results the day before my second covid jab and on that day I felt pretty terrific. So I find it interesting as well that how you feel in terms of your ME (no sore throat, no fatigue, PEM blocked, still pacing etc (I felt this good due to the heroes veridai protocol listed in my signature - when I got the covid vaccine all these symptoms reappeared over several weeks)) in my case would seem to have had no effect on the underlying issue causing my ME. I had been on the protocol about 30 days by then.

More analysis by severity:

Severely ill patients had the lowest CK value mean average of 64. Whereas mild patients had a CK value of 88. And healthy controls as I said above had an average of 121. So severely ill patients had a 50% reduction compared to controls.

There's a lot more data here really but I need to write my own results down to see how I'm doing. I like this study I feel like it gives us data to work with instead of a black hole with nothing in it.
The CK deviation can be caused by the lack of movement. As soon as your muscles work your CK goes up. I discussed this with a friend of mine who‘s a doctor, that‘s his explanation.
 
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Well my argument is. Do we definitely know that ME patients who are mild and on any protocol that allows exercise (they can exercise on the protocol without PEM) does there CK value go up or does it just stay low?

Even so there's certainly plenty of reasons why the data may show the discrepancies and not overly exciting I guess.

The potassium is interesting though. Almost everyone talks about that. At least I've seen lots of threads about it on PR.
 
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Well my argument is. Do we definitely know that ME patients who are mild and on any protocol that allows exercise (they can exercise on the protocol without PEM) does there CK value go up or does it just stay low?

Even so there's certainly plenty of reasons why the data may show the discrepancies and not overly exciting I guess.

The potassium is interesting though. Almost everyone talks about that. At least I've seen lots of threads about it on PR.
I haven’t. You mean some benefit from supplementing potassium?
The rest isn’t too exciting I think. Skimmed the study. There are better markers to study low-grade inflammation than CK bc its artefacts due to our lifestyles
 
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Lots of people have mentioned that they needed extra potassium. So I figure it must be a common issue.

Yeah lifestyle adjustments and aggressive pacing + lack of energy can certainly answer a lot of things. Hope your doing ok btw.
I’ll try to increase my potassium. See what happens. Honestly, I don’t. Waiting for my doc giving me Ketamine. Could take weeks.
 

Pyrrhus

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I recently had whole bloods taken so I read this article and found that it seems all the biomarkers in the study line up with my own blood test results. Which for me was really interesting!! Especially as the cohort sizes are decent.
And I found it interesting that they found higher Low-Density Lipoproteins (LDL) in patients compared to controls. I've been suggesting this possibility to my doctor for years, saying that my high-ish LDL is probably related to my ME, not to any cardiovascular disease.

Creatinine kinase (CK) is an enzyme which is necessary for muscle function and is found in the heart and skeletal muscles as well as other tissues. It signifies muscle cell damage and death and is measured to diagnose and monitor muscle damage. CK levels tend to be higher in people with greater muscle mass.
Severely ill patients had the lowest CK value mean average of 64. Whereas mild patients had a CK value of 88. And healthy controls as I said above had an average of 121. So severely ill patients had a 50% reduction compared to controls.
The CK deviation can be caused by the lack of movement. As soon as your muscles work your CK goes up. I discussed this with a friend of mine who‘s a doctor, that‘s his explanation.
I have also heard that low creatine kinase (CK) is to be expected in sedentary people.

re: B12
Also note that the higher blood levels of vitamin B12 may possibly indicate a glutathione deficiency, which could prevent B12 from being utilized inside cells, letting B12 build up in the blood, unused. For more info, see:
https://forums.phoenixrising.me/thr...deficiency-or-methyl-trap.79380/#post-2261914
https://forums.phoenixrising.me/thr...deficiency-or-methyl-trap.79380/#post-2318282
 
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Ah yes glutathione! Very good point. I haven't had a chance to read all the data probably so I'm sure I've missed some data points.

I assumed b12 might be high because patients are probably all supplementing with b12. But no actual way to know for sure what there doing.

I think you probably have a point about the glutathione. Funnily enough that's another thing I am not sure I've ever responded to (b12 or glutathione precursors) I do take Thorne b complex every single day now. And it seemingly does not over stimulate me but definitely was something my body needed.

I've got no doubt your right about the LDL. My last LDL test (was 1.5mmol) whereas in this study healthy controls were 2.7 and as you say ME average 3.3. So I'm way under. Either that's the Italian genetics at work or its this very strict diet I'm on for Josh's Protocol?

Have you ever seen a study where they showed the hormones in a similar way to this study? Testosterone, free t, dhea, cortisol, th3 and 4 and any other applicable thyroid hormones and neuro hormones. Plus estrogen. I wonder if there's a more obvious trend in that data.

Taking into account what everyone has said here if the CK value is the product of a more sedentary lifestyle then I don't actually fit the data pattern as my CK is low but that could be anything. My b12 has always been higher than controls it seems (3 year average), potassium 4.1 in 2019 while experiencing a very bad crash, although my lymphocyte levels were very low post oxymatrine treatment and that might explain why I became bedridden for about a week and unable to work for 3 weeks.

I'm also on the lookout for data though to truly corroborate a diagnosis of ME. I think that the sedimentary rate test (this study seems to prove that was not the case in ME patients: http://simmaronresearch.com/2019/05...-uk-chronic-fatigue-syndrome-me-cfs-research/) seems like an excellent one that one doctor in America says catches almost all of her ME patients without fail. I'll have to see if I can get it.

Thanks for your thoughts @Pyrrhus
 
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Pyrrhus

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View attachment 44024
Hmmm, are they equating ME/CFS with fibromyalgia?
It certainly looks like they view them as closely related conditions, at the very least. This may be how they view things in Italy.

In Spain, they are also viewed as closely related conditions, and the two are often mentioned in the same breath. Unfortunately, this cultural view has transferred to Latin America. Not that long ago, in Mexico, ME was referred to as "Fibromyalgia Light"!
 
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It certainly looks like they view them as closely related conditions, at the very least. This may be how they view things in Italy.
Basically nobody knows about ME/CFS in Italy (source: I'm Italian). I say I'm not terribly surprised of seeing ME/CFS lumped together with fibromyalgia. Of course there are similarities between FM and ME/CFS but they are not the same, as the "guest editors" seem to imply. The letter seems to be written by people who are not very familiar with ME/CFS or fibromyalgia (the charitable assumption is that something has been lost in translation).
 
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I think fibro is a symptom. So ME folks have those symptoms. When my symptoms go acute, and intensify, I get alot MORE of what seems like fibro pain etc.

I've never even mentioned it to my doctor. We have such a huge list of things to mention.

(ME is Fibro lite? WOW)