Chronic Fatigue Syndrome (CFS) Same Symptoms

[muppetdog]

It's amazing how people with Chronic Fatigue Syndrome (CFS) have the same symptoms as a lot of people on this board. Welcome to the age of the mystery illness

http://forums.phoenixrising.me/index.php?threads/anyone-else-with-neuro-stuff-like-burning-pain-and-tingling.14528/

[ShawnW]

Just a decade ago I was taught fibromyalgia isn't real...just crazy women get it. I knew after getting a terrific rheumatology rotation that this isn't true, docs just don't understand it. I think there are many sister diseases in the following categories....

1) BFS
2) Fibromyalgia
3) CFS
4) PTSD

[Little Lost]

Neuroinflammation always thought to be present in CFS/ME, but the routine markers gave mixed results. A new study used a different marker. They used PET scan technique to look for activation of astrocytes or microglia that is associated with such inflammation.

Results showed neuroinflammation was indeed widespread and 45 to199% higher in CFS patients compared to healthy controls. Interestingly the levels in various brain regions seemed to correlate with the patients main symptoms. They said :

a) patients with inflammation concentrated in the amygdala, thalamus and midbrain main symptoms were CFS dominated by cognative impairment.

b) Those showing neuroinflammation signs in the cingulate cortex and thalamus predominant symptom was CFS with pain.

c) Lastly those with activation in the hippocampus seemed to suffer more depression with their CFS.

Of course this is just one study .My only issue is concerning Point c.....I was not sure if depression could give rise to activation in hippocampus rather that saying activation gave rise to depression)....A bit like the chicken and egg....though I like to say the egg came first because dinosaurs laid eggs and they were around long before chickens. )..Anyway in the words of fall out boy...I digres.

Hx.

PS on the subject of eggs, guess who drew the short straw and has to jump about the garden in a rabbit suit (Easter and kids enough said).

[Yuliasir]

looks like there is a good reason behind this study...
if we really have a kind of encephalitis, either post-viral, or autoimmune, or parasitic (like in borelliosis), then a good course of prednisone IV could help - and we have such story in our records.

I think for those who get eventual cure in 2-3 years, inflammation is faded due to narual resources of the body.
For those who twitch for years and then get a relapse/worsening, might be some deteriorating factors increasing inflammation.

and we have SuzyQ, who was clinically so close to MS picture that she was admitted to the hospital and get a course of IV prednisone.
She reported really magical cure after that - first, somehow she managed to get rid of fears (which may be not only spiritual win, however this was a case for sure, but also a result of lowering amygdala inflammation level), and she reports that she is practically symptom free, which is not frequent case among us.

But to get IV prednisone, due to its side effects, usually one need a really bad clinical picture... and those of us who receive it as IM shots or oinments due to pain in the joints, probably would not benefit so much...

[muppetdog]

But seriously! What study are you talking about? I don't see anything referenced just anecdotal secondhand.

[Little Lost]

Hi MUPPETdog not sure if it was myself you seemed a bit perplexed with,

So the first statement I made was that CFS/ME was often associated with neuroinflammation and as this has been studied since 1969 there are numerous articles (literally in the 100s especially in the 1990s when interest in CFS/ME and then later gulf war syndrome really took off). These are from a huge range of disciplines especially from the fields of neurology, endocrinology, and immunology, also from conventional and alternative medical sources, and from the ancient histories of such syndromes.

There are also countless reviews throughout the last 2 decades which summarise the topic. Two good review articles about neuroinflammation and CFS/ME summarising the most recent developments (2013 and 2014), are the two listed below ( the second one gives a possible model which fits alot of what has been observed with inflammation in CFS). Though I am sure you will be able to find many more. The evidence is not simply a large number of small instances which begin to suggest a trend, but there are many large studies included throughout the years.

The third article is the one I referred to in my second statement i.e. concerning the areas of the brain involved in certain cases of CFS/ME. It is just out last month so is ahead of print, but you can get it on pubmed. This is a small study and I did say in my post it was just “one study”, but does use an interesting way to look at neuroinflammation, out with the usual markers.

I am sure you are more informed than myself about these things, hence why you started the discussion. Neurology not being my field, but I thought from a layman’s term (as I am) your post was interesting considering I had been to a seminar on this topic quite recently and some of the papers were discussed. I never thought of all these entities in the same way as Shawn did. The only reason I went to the seminar is that I am interested in TLRs in immunology, and they are often looked at in CFS/ME, so this novel way of assessing neuroinflammation interested me, as did your initial observation.

However here are the references. followed by their links. I know you yourself have used pubmed articles in your past posts so will know how to access them.

Hx


Curr Neuropharmacol. 2014 Mar;12(2):168-85. doi: 10.2174/1570159X11666131120224653.
Oxidative and Nitrosative Stress and Immune-Inflammatory Pathways in Patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS).
Morris G1, Maes M2.

Metab Brain Dis. 2013 Dec;28(4):523-40. doi: 10.1007/s11011-012-9324-8. Epub 2012 Jun 21.
A neuro-immune model of Myalgic Encephalomyelitis/Chronic fatigue syndrome.
Morris G1, Maes M

J Nucl Med. 2014 Mar 24. [Epub ahead of print]
Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An 11C-(R)-PK11195 PET Study.
Nakatomi Y1, Watanabe Y.


Here are the pubmed links. to the abstracts and portal for access to full articles.


http://www.ncbi.nlm.nih.gov/pubmed/22718491


A neuro-immune model of Myalgic Encephalomyelitis/Chronic fatigue syndrome



http://www.ncbi.nlm.nih.gov/pubmed/24669210

Oxidative and Nitrosative Stress and Immune-Inflammatory Pathways in Patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS).

http://www.ncbi.nlm.nih.gov/pubmed/24665088
Neuroinflammation in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An 11C-(R)-PK11195 PET Study.

[Little Lost]

Hi Yuliasar,

Sorry meant to post after I had replied to MUPPETdog but ran out of time.

It is really interesting the story about SuzyQ and others. Perhaps there is an element of neuroinflammation involved in a subset of us BFS sufferers. Perhaps TwitchyDoc may be the best to comment on this. He is more in this field especially being involved in neuropathology.

However Raindogs story is the one I found interesting from an immunological point of view.

I noticed through their posts that Raindog and a few others take marijuana to improve their symptoms, and most know it has long been used by some MS sufferers. One of the most bioactive substances in marijuana is called cannabidiol (pharmacologically isolated this compound has anti-inflammatory effects without mind altering effects). Recently they investigated just one of its modes of action (i.e. they know it reduces inflammation in spinal cord, but they didn’t know why). So they found cells treated with cannabidiol failed to produce an inflammatory molecule (a cytokine) called IL-17, and interestingly IL-17 can be neurotoxic. So it is thought that cannabidiol prevents neuroinflammation or reduces it by blocking the cells production of neuroinflammatory IL-17.

(reference
Ewa Kozela, Ana Juknat, Nathali Kaushansky, Neta Rimmerman, Avraham Ben-Nun, Zvi Vogel. Cannabinoids Decrease the Th17 Inflammatory Autoimmune Phenotype. Journal of Neuroimmune Pharmacology, 2013; DOI: 10.1007/s11481-013-9493-1 )


IL-17 is something I I researched and worked with it in context of RA and autoimmunity, and I think the effect of cannabidiol may go a bit further than just simply blocking IL-17 production. (Though this is just my own thoughts not actual research so no references). I think it doesn’t just stop IL-17 but concurrently promotes the secretion of TGF-b a potent anti-inflammatory molecule. Here is my explanation though just skip if it really boring.

So IL-17 comes from cells called Th17 cells, but these cells can also during their development go in the opposite direction and produce an important anti-inflammatory cytokine called TGF-b. So these cells show dichotomy in that they can promote inflammation through IL-17 or prevent/ resolve inflammation through TGFb. So imagine a parent they can give a child a present if they are good, or a row if they are bad .i.e. depending on the circumstances the parent responds appropriately either gives reward or a row. Similarly these cells can either become present givers (produce non inflammatory TGFb) or row givers (produce aggressive IL-17). Normally they are one or the other, but importantly they can’t be neither. So take away the ability to produce IL-17 they probably by default produce TGF-b and this suppressive environment promotes other cells to do the same. Hence skewing the immune response to calm rather than a storm.

So cannabidiol in marijuana lowers neuroinflammation by decreasing IL-17 ( as said in reference) and perhaps additionally resolves inflammation by increasing TGF-b( just my thought). Anyway wish the above researchers had tested for increased TGF-b production)

While as you said with SuzyQ the steroids resolved some of her symptoms, there is as you rightly point out a need to exercise caution with this blanket approach, especially long term treatment with steroids. Benefit must outweigh the risks. Before randomly treating any inflammation you need to know why it is there in the first place. Inflammation is an important part of an active immune response. If we don’t have appropriate inflammatory responses we would have overwhelming infection. For example we don’t want to pour water on a fire that is being used to burn contaminated clothing, i.e. we need some fires, we need some inflammation.

So if some of us do have this theoretical neuroinflammation, we may need it (as you pointed out the original trigger may be viral, parasitic, bacterial etc i.e. not just autoimmune, and who’s to say the original invader is not gone yet). So say it was viral, and it is still ongoing response, we need it despite the side effects it gives us. Perhaps the twitching is the lesser of 2 evils, i.e. control of brain infection vs. side effects of neuroinflammation and resulting hyper excitability. Perhaps a subset of us have an active infection or something that our immune system is still fighting, or trying to reach a homeostasis with. Not all immune responses are like flu in and out and resolved in a few days. Some infections vs immune system battles are like long games of chess, evolving with every move and counter move. Some never resolve like toxoplasmosis and TB, they are just constantly contained but never erradicated. (


So clearly inflammation can be protective but there are clear cases where inflammation is causing more harm than good, in cases like MS and autoimmunity where the immunoregulation is dysfunctional. The marijuana may be helping by decreasing inflammation and reducing stress hormones etc, but it will be in doses that will not be immunosuppressive enough to be detrimental, i.e. cannabidiol may be less immunosupressive than say steroids. Not that I am promoting its use, it is mind altering and can have adverse effects and these can be unbearable in some people who go a nutter on it). just looking at reasons why it may work in some people with BFS, as a clue to what may lie behind the mechanisms of the disorder.

For example RAINDOG uses and it seems to have a good balance,

One argument against the neuroinflammation model for BFS may be the fact that our MRI etc were clear and showed no signs of such pathology. However inflammation can be discrete and not being a neurologist I am not sure if this would always be picked up on imaging.( i.e. according to articles I referenced for muppetdog them perhaps not).

Hx

[Yuliasir]

Wish we have cannabis legal for medical purposes!

my own BFS gets stronger now due to long term stress so some anti-inflammatory drugs may be useful...

But those guys (reseachers) had to use PET which is different form MRI, that is why probably we do not see that inflammation... aslo MRI tends to visualise more details in white matter than in glia which is a grey one as far as I can remember... so probably should we undergo PET scanning, we may show some neuroinflammation too, who knows.
I never heard that anybody of us had PET scanning prescribed (as it usually involves IV isotope shot as far as I know... quite specific test!

[BFSBurger]

looks like there is a good reason behind this study...
if we really have a kind of encephalitis, either post-viral, or autoimmune, or parasitic (like in borelliosis), then a good course of prednisone IV could help - and we have such story in our records.

I think for those who get eventual cure in 2-3 years, inflammation is faded due to narual resources of the body.
For those who twitch for years and then get a relapse/worsening, might be some deteriorating factors increasing inflammation.

and we have SuzyQ, who was clinically so close to MS picture that she was admitted to the hospital and get a course of IV prednisone.
She reported really magical cure after that - first, somehow she managed to get rid of fears (which may be not only spiritual win, however this was a case for sure, but also a result of lowering amygdala inflammation level), and she reports that she is practically symptom free, which is not frequent case among us.

But to get IV prednisone, due to its side effects, usually one need a really bad clinical picture... and those of us who receive it as IM shots or oinments due to pain in the joints, probably would not benefit so much...

Yes I suggested prednisone many times, many, many times, months ago.

I am convinced BFS has an immune / inflammation foundation, and since then I have run into many with inflammatory immune conditions (Note, we are not talking about MS here), that resolved with Prednisone, or other immune "calming" regimens.

And they twitched too.

Since Prednisone is considered a "Big gun" something like LDN (Low Dose Naltrexone) may be a better solution.

Little Lost - i had a full workup of my immune functions (all the IL's and etc) by Dr. Nancy Klimas at the Neuroimmune Institute at Nova southeastern. You may be interested in the results. She found numerous imbalances both high and low range with me. That's when I was feeling my worst.

Surprisingly, 8 months later, when I was 100% better symptom-wise, she re-ran the tests and the numbers were even further out of range, indicating that whatever this is, is continuing to progress.

[Yuliasir]

Burger,
please note that prednisone, especially in high dosage, especially IV course - is a really really 'ultimo ratio regna', and this could not be suggested or recommended to ANYBODY except your doctor will do that. And doctors usually do not recommend that unless they see that therer is a life saving need. Side effects are so prominent, that generally it is not a first line treatment choice anyway, not in BFS.
Not for everybody at least.
Many of seem to have all issues resolved with a time, and your own experiense shows little or no correlation between symptomes and immunological indices

[muppetdog]

Little Lost - Thanks for the citations. You get a lot of folks on these health boards that just quote anecdotal crap when it comes to a lot of these mystery illnesses. I always like to hold people accountable for what they claim research has said.

Those are good summations of some of the theories on CFS but as we all know, it goes a lot deeper than that. Good to know people are thinking though and not just accepting the misery.

MD