Research since January 2017

[neweimear]

Hi
Not in the best of spirits here and thinking has much happened since Jan 2017 in terms of ME research progress. I'm not feeling too excited. I must admit I was so thrilled with OMF's findings early in the year, Mark Davis also perked me up. The increase in NIH funding another plus and the three Research Centres. The Norwegians gone to phase B of CycloME trial. The researcher Systrum on the cardiac pulmonary system and Naviaux. Suramin....too far away but still, a drug mentioned. Also, good to hear Dr. Davis mention clinical trials but not sure what they are targeting if they don't know what the substance in the blood is that causes cells to stress. Oh yes, the intramural study. Great its happening but way too slow. Any other positives or hopeful thoughts on 2017. I know rituximab also but I'm not overly hopeful on that due to so many unsuccessful treatments people have had on here. And of course Unrest but will Unrest increase NIH funding???

 

[Learner1]

It's very easy to discouraged. Yesterday, for the second time, I went to my new primary care doctor, one I'd drafted to help me get help from the mainstream medicine system if I need it.

Amazingly, she'd done a fair amount of research of her own on ME/CFS, and my other diagnoses and treatments and she'd talked to her colleagues about me. She was frustrated that there don't seem to be any good answers, studies on treatments, etc. Her immunologists didn't understand the IVIG protocol I'm on, her endocrinologist doesn't understand my sick endocrine system. She clearly understood that I'm ill and pursuing treatments that I'm making progress with, but felt utterly unable to help. Her honesty was refreshing, at least, and I decided to keep a relationship with her as she definitely cared and was concerned and wanted to help. If something goes wrong, she's at least hooked into the mainstream and maybe she'll be able to help.

And, after seeing a dozen MDs who were hostile and dismissive, at least this was a breath of fresh air, but it just showed me how far the promising research we're seeing is from the mainstream.

A more fruitful approach, at least for me, has been to think outside of this box. After accidentally learning about naturopathic medicine several years ago, I've been able to benefit tremendously from this approach.

My ND has run all kinds of tests, from standard LabCorp tests to nutritional testing to microbiome testing, and found a plethora of abnormalities which correlate well with what the genomics and metabalomics researchers are finding. We've been working to normalize the abnormal systematically, using a functional medicine approach, with nutrients, botanicals, hormones, and even pharmaceuticals, in oral, sublingual, topical, injectible, and IV formats.

Based on his insights and lab work, I sought out a top expert a plane ride away, who is on top of all the latest ME/CFS research, and who has been using the newest tools to help others. His insights have dovetailed with what I was already doing, but brought bigger guns to the battle, which are helping me improve further.

This illness is tremendously complex. There are multiple factors that cause it - genes, infections, toxins, deficiencies, etc. and it's not precisely the same for any of us.

I believe the answer is in understanding the web of factors that have caused each of our illnesses, and making strategic interventions to right the ship. While we'd all like one, there is no magic pill. But there likely will be 4 or 7 or 10 solid interventions that can go a long way to a cure.

What's on the horizon is quite promising and there are enough glimmers there that there's something to work with today for the most forward thinking, knowledgeable, and talented doctors who are willing to take thoughtful risks. Not everyone will benefit from these early gambles, but there are already successes and it's definitely scary, expensive, tedious, and risky to be a patient.

20 or 30 years from now, perhaps there will be standards of care for doctors like the one I visited yesterday for her and her colleagues to confidently follow. We are a long way from that time, even though the exciting developments of the past 3-5 years are allowing the pioneers to trial new treatment plans today.

It pays to keep reading this new science, making connections, discussing it with our doctors, and making the best educated guesses we can and hoping there's even better information just around the corner.

Time is ticking by, and for now, we just have to make do with what we have..there's a lot that can be done today. But there are no guarantees.

2017 has offered a lot of hope.

 

[Martin aka paused||M.E.]

@Learner1 Thank you for this encouraging post! Even if you mention the lack of basic knowledge about ME.

This post is long, I am sorry. But the message fits this thread:

I think that the answer is already out there. But the problem is that this disease is so complex that the answer is fragmented into many pieces. And there might be someone who actually knows what to do but hasn't shared it yet.
Let me give you an example: I suffered from seborrheic dermatitis due to very oily skin. If you visit any dermatologist he will prescribe you an antifungal and cortisone. The thing is: That won't fix the cause of it, mainly the oily skin. And for many patients it won't work at all (you can search the web and will find thousands of people suffering, many being suicidal because of the constant burning and itching). If you ask the dermatologist what to do against oily skin he will say: "There is nothing out there except of isotretinoin (accutane) and that has no approval for oily skin and furthermore accutane is a known trigger for seborrheic dermatitis. There is no cure for dermatitis! You will have it your entire life and die with dermatitis!" WOW!

So I searched the web for months, more than a year. And I had almost given up, until - accidentally - I came over a short post of one guy who said it has to be a lipid metabolic disorder and that oily skin and seborrheic dermatitis should go away if you balance omega 3 and omega 6 and bring your body back into homeostasis. My dermatologist - even if she is very intelligent and teaches at the university - found this theory ridiculous and said that it does not make any sense at all.

You know what: I tried it and it just took a few days and oily skin was gone. A few weeks and dermatitis was gone. It never came back. And I suffered from dermatitis for years!

So, who knows for ME... Maybe the truth is out there (*X-Files-Theme*)

 

[neweimear]

@Learner1 Thank you for this encouraging post! Even if you mention the lack of basic knowledge about ME.

This post is long, I am sorry. But the message fits this thread:

I think that the answer is already out there. But the problem is that this disease is so complex that the answer is fragmented into many pieces. And there might be someone who actually knows what to do but hasn't shared it yet.
Let me give you an example: I suffered from seborrheic dermatitis due to very oily skin. If you visit any dermatologist he will prescribe you an antifungal and cortisone. The thing is: That won't fix the cause of it, mainly the oily skin. And for many patients it won't work at all (you can search the web and will find thousands of people suffering, many being suicidal because of the constant burning and itching). If you ask the dermatologist what to do against oily skin he will say: "There is nothing out there except of isotretinoin (accutane) and that has no approval for oily skin and furthermore accutane is a known trigger for seborrheic dermatitis. There is no cure for dermatitis! You will have it your entire life and die with dermatitis!" WOW!

So I searched the web for months, more than a year. And I had almost given up, until - accidentally - I came over a short post of one guy who said it has to be a lipid metabolic disorder and that oily skin and seborrheic dermatitis should go away if you balance omega 3 and omega 6 and bring your body back into homeostasis. My dermatologist - even if she is very intelligent and teaches at the university - found this theory ridiculous and said that it does not make any sense at all.

You know what: I tried it and it just took a few days and oily skin was gone. A few weeks and dermatitis was gone. It never came back. And I suffered from dermatitis for years!

So, who knows for ME... Maybe the truth is out there (*X-Files-Theme*)

That is off point, sorry!! I just want opinions on research progress since Jan 2017.

 

[Martin aka paused||M.E.]

That is off point, sorry!! I just want opinions on research progress since Jan 2017.

Might be a bit off topic.
But you have mentioned a lot. I don't really know why you think that this is discouraging? That's the reason for my post.

Another opinion on progress: There is a study published in April about the fecal metagenomic profile by Ian Lipkin et al. linking ME to IBS which I found very interesting... They guess similar treatments with probiotics could help in both disorders.

 

[Learner1]

But the problem is that this disease is so complex that the answer is fragmented into many pieces.

This is the problem indeed. It's putting together all the research into one cohesive model that doctors can use to base treatment on.

 

[Murph]

The two big published research this year were:

1. The journal edition devoted to killing the PACE trial. Undoing bad research will pave the way for new.
2. Montoya's cytokine study.

I have thought a lot about that curious stepped pattern showing lower cytokines in mild patients and higher cytokines in severe patients.

I suspect it cannot be explained by a single process. The easiest way to explain it is as the interaction of (at least) two processes. An immune activation process and an immune suppression process. In mild patients suppression is winning. In severe patients suppression is not strong enough.

This battle to control immune up- and down-regulation is also part of sepsis and Systemic inflammatory response syndrome (SIRS).

SIRS "is an inflammatory state affecting the whole body. It is the body's response to an infectious or noninfectious insult. Although the definition of SIRS refers to it as an "inflammatory" response, it actually has pro- and anti-inflammatory components."

The Melbourne team of Armstrong and McGregor have been comparing ME/CFS to sepsis for a while now.

--
There's been some exciting unpublished research from Davises (Ron W (impedance) and Mark (t cells clonal expansion)). A lot is happening and in the next 12 months we can probably expect the pace to pick up. Especially: Two huge papers from Fluge and Mella