Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics, 2018, Lipkin et al

[NelliePledge]

@Sing I’ve had a lot of laryngitis and swollen glands in my neck when I first started getting noticeably ill about 7 years ago at one stage a dr thought I had mumps. I don’t get swollen glands so much now but I do get tender points around rib cage shoulders and neck which I believe are tender lymph nodes.

 

[Sing]

Re the symptoms of swollen glands and fevers, makes sense they’d be related to what kicked off the ME, as well as possibly the length of illness. I believe my case started with an enteroviral illness.

 

[Mij]

There is also the matter of how many years someone has been sick. The first three years were found (Mady Hornig, etc.) to be characterized by higher than normal infections and symptoms of active infection, whereas in the later years, this is not the case. That would be my experience too, after 22 years of ME.

See, this is where we're all different. I had the initial viral/vertigo/mild sore ear/sore throat onset for 5-6yrs. Then the relapse 7yrs later from taking immune modulators which brought on autonomic dysfunction, this and PEM are the most debilitating symptoms for me.

For the last 15 years my ears/glands are inflamed and sore 80% of the time after 27 years of illness. And the vertigo keeps coming back even worse than before.

 

[Trish]

A couple of articles have been published about this research and are discussed on this thread.

 

[deleder2k]

Has anyone tried ordering B5? "Use of vitamin B supplements was associated with higher levels of pantothenic acid and lower fatigue scores (data not shown)."

 

[Mithriel]

One of the main symptoms of my PEM is swollen and painful lymph nodes. This is often accompanied by drenching night sweats and fever dreams. My normal body temperature is low (in hospital every nurse thought the electronic thermometer was broken when the got my result).

I am EBV negative and had a Coxsackie B onset many years ago

 

[FMMM1]

Sort of along the same lines, I noticed that ceramides were mentioned, but only becasue I first heard of ceramides last winter when my dermatologist prescribed a ceramide-based cream for my hands that were chapped to the point of bleeding.

Ceramides are a waxy lipid molecule that help to retain moisture in the uppermost layer of the skin. They also perform a number of other functions inside the body, including involvement in the cell signaling that leads to programmed cell death (apoptosis).

The paper indicates that the levels of some ceramide species are higher than normal in ME/CFS patients with IBS and lower than controls in ME/CFS patients without IBS. According to the paper, there are possible links between ceramides and IBS and metabolic disorders and increased levels may be associated with an altered gut microbiome. They suggest that blocking the ceramide precursor molecule might decrease inflammation by lowering ceramide levels.

In the same paragraph, they mention mannitol:

I had a brief look at this paper earlier; it looks like a bit of a monster i.e. there a lot of information here.

I wonder if these findings fit in with Ian McGregor's theory (emerge conference last month) that ME is chronic sepsis. I.e. leaky gut produces chronic sepsis; altered metabolism (energy production) failure of muscles to take up oxygen ----. Here's an article which deals in clearer language (for lay people - I'm one) with this subject - sphingolipids, ceramides --- gut bugs --:
https://www.omf.ngo/2017/10/19/treating-autism-and-mecfs-could-one-drug-do-both/

 

[intrepidation]

It seems that every research group is seeing somewhat different metabolite profiles. There seems to be a broad agreement that energy production is affected but the details vary.

Running trend in these kind of studies, seems to me, to be disturbances to lipid utilisation and maybe the TCA cycle?