IOM Report On ME/CFS To Be Released

[velvetmagnetta]

Thank you, both RitaA and Duncan. So sorry for the pressure, Duncan, but some days I don't read very well and did not register what you had posted about the link.

But have no fear! RitaA to the rescue! Great links. Some technical and some easier to understand. I had heard Lyme people talking about the POTS thing before and I think I've even seen "OI" one or two times, but never knew what they were. Very good to know. I wonder why none of the doctors I have seen have ever brought these possibilities up? At least some of these symptoms seem to match very well with some of mine.

I don't see much about pain in these articles. Is OI painful or very painful or not at all?

[duncan]

OI is just one major component of ME/CFS. Pain is usually considered a different component, even if it can happen coincidentally with OI.

There is a good deal of positive reactions to the IOM report. Patients are very pleased about the inclusion of PEM as a diagnostic criteria. This is a big victory, at least on paper. They are also happy about the seemingly straight forward dismissal of biosocial/functional/somatoform school, and along with it the discredited therapy of GET and CBT (although that is the only major therapy on the CDC's CFS website).

There is also a good deal of negative reactions. One of a the BIG negatives purportedly is a de-emphasis on pain as a component, but also on too little attention paid to immune dysfunction and neuro issues. There have been MANY studies demonstrating major problems in all three of those areas, and for the report to allegedly not focus enough on them is a serious misjudgement in some patients' opinions.

There is pretty much a split about the new name - SEID - as well. Many think it is a HUGE improvement over CFS, and a great victory because the name incorporates the concept of post-exertional penalties for physical, cognitive and emotional efforts. Other are terribly disappointed because the name still revolves around a SYMPTOM rather than a biological dysfunction, such as neuro-immune disease, or immune dysfunction etc.

[RitaA]

I had heard Lyme people talking about the POTS thing before and I think I've even seen "OI" one or two times, but never knew what they were. Very good to know. I wonder why none of the doctors I have seen have ever brought these possibilities up? At least some of these symptoms seem to match very well with some of mine.

In my humble (and non-professional) opinion, a tilt table test should be ordered by one of your medical professionals if you are experiencing symptoms suggestive of autonomic dysfunction.

While POTS (or any other type of orthostatic intolerance) is not specific to Lyme disease or any other illness, it may definitely play a role in some of your symptoms. Here's what I mean by that:

http://www.ncbi.nlm.nih.gov/pubmed/24229326

BMC Med. 2013 Sep 17;11:205. doi: 10.1186/1741-7015-11-205.

Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics.

Morris G1, Maes M.

Author information

1Tir Na Nog, Pembrey, Llanelli, UK.

Abstract

BACKGROUND:
'Encephalomyelitis disseminata' (multiple sclerosis) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are both classified as diseases of the central nervous system by the World Health Organization. This review aims to compare the phenomenological and neuroimmune characteristics of MS with those of ME/CFS.

DISCUSSION:
There are remarkable phenomenological and neuroimmune overlaps between both disorders. Patients with ME/CFS and MS both experience severe levels of disabling fatigue and a worsening of symptoms following exercise and resort to energy conservation strategies in an attempt to meet the energy demands of day-to-day living. Debilitating autonomic symptoms, diminished cardiac responses to exercise, orthostatic intolerance and postural hypotension are experienced by patients with both illnesses. Both disorders show a relapsing-remitting or progressive course, while infections and psychosocial stress play a large part in worsening of fatigue symptoms. Activated immunoinflammatory, oxidative and nitrosative (O+NS) pathways and autoimmunity occur in both illnesses. The consequences of O+NS damage to self-epitopes is evidenced by the almost bewildering and almost identical array of autoantibodies formed against damaged epitopes seen in both illnesses. Mitochondrial dysfunctions, including lowered levels of ATP, decreased phosphocreatine synthesis and impaired oxidative phosphorylation, are heavily involved in the pathophysiology of both MS and ME/CFS. The findings produced by neuroimaging techniques are quite similar in both illnesses and show decreased cerebral blood flow, atrophy, gray matter reduction, white matter hyperintensities, increased cerebral lactate and choline signaling and lowered acetyl-aspartate levels.

SUMMARY:
This review shows that there are neuroimmune similarities between MS and ME/CFS. This further substantiates the view that ME/CFS is a neuroimmune illness and that patients with MS are immunologically primed to develop symptoms of ME/CFS.

PMID:
24229326
[PubMed - indexed for MEDLINE]
PMCID:
PMC3847236
Free PMC Article

One other aspect that I don't believe we've touched on yet is that some people object very strongly to the grouping of ME and CFS as one medical condition. I have to wonder what bearing the new terminology will have on these folks.

http://documentingme.net/2014/01/31/me- ... -the-same/

ME vs. CFS – They’re Not The Same!

Jan 31

Heads up, folks! This is probably the most important post I will ever write. It’s certainly one I feel very passionate about. It’s also a bit daunting, because I really want to get it right, to write this post in such a way that people will understand the truth in what I’m saying and pass it on. So, here it goes.

ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. They scanned a couple files, then spent the rest of their trip skiing and relaxing. They returned to their jobs with the official conclusion that there was nothing to worry about. Soon after, the US formed a committee to discuss the illness that caused the outbreak. There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked.

[duncan]

Rita, you have hit the nail on the head. CFS is a construct built in the US on vague symptom clusters and diagnoses of exclusion. ME is not really on the menu as a diagnosis in the US, despite it's being recognized by the WHO as a neurological disorder. ME was defined by Ramsey back in the 50's as inflammation of the brain and spine. The WHO embraces this. We here in the Lyme community are all too familiar with its kissing cousin, Lyme Encephalomyelitis.

This new name and definition, although better than CFS in many regards, does not resolve that profound difference. I suspect battle lines will still be drawn.

Perhaps new compromises will emerge. But I suspect the story will not end with this IOM report.

[ChronicLyme19]

Yeh, VM it might not be a bad idea to get that checked out. My LLMD practice screens people for POTS every time they come into the office. Every time you come in, you get your blood pressure and pulse checked sitting down, then standing, then you get to stand for 5-10 min intervals where they come back and check it 2-3 ore times. It's interesting as this is related to neuroimmune diseases, as I usually don't have this problem, but I started to develop it when I herxed really badly tho.

Excuse my ignorance Duncan, but what are the differentiating factors between Lyme Encephalomyelitis and Myalgic Encephalomyelitis?

[duncan]

CL19, the only difference is known aetiology. Myalgic refers to muscle pain, and although Lyme Enceph does not have that in its name, so many Lyme patients suffer from migrating muscle and joint pain, that the term certainly could have been included.

So with Lyme Enceph, we know Bb is the cause. With Myalgic Enceph, or ME, the cause is unknown.

Also, I forgot about the endocrine stuff that many ME/CFS patients suffer with. Just as we do, except we explain it by saying Borrelia is more or less indiscriminate with organs/systems it can attack.

There is so much involved here. For instance, with Encephalmyelitis, there should be inflammation of both the brain and spine. Personally, I think both cases are accurate when the disease is acute, but as it turns chronic, the inflammation element subsides, at least somewhat, making it more challenging to find with imaging technologies.

Regardless, with both diseases, all major bodily systems are potentially subject to attack, and so pain and vertigo and cognitive decline and immune dysfunction and endocrine issues can all be at play.

[ChronicLyme19]

Gotcha, thanks, I wasn't sure if it was as simple as that. When I read things like this, it makes me glad at least to know what we are fighting, Lyme. There seem to be so many other diseases, like MS, ME/CFS/SEID, fibromyalgia, GB etc, where there are these systemic neuro/immune/endo symptom patterns and they don't known if the cause is one or many.

[duncan]

If it weren't for the silly contrived PTLDS label, many of us who do not quite qualify under the 2T system would be slapped with the ME/CFS label. In fact, technically, PTLDS is ME/CFS in a lot of main street medicine's eyes. Of course, many who never met the 2T requirements are, or were, thrust into a ME/CFS diagnosis at one time or another, myself included.

It is commonly believed that there is a trigger mechanism for ME/CFS. EBV as the principal agent behind the disorder was a highly popular theory. Today, it is believed it could be ANY trigger - including Bb - that for some unknown reason sends our bodies' major systems spiraling out of control.

One controversial unifying theory was/is a retroviral connection. Most of us are familiar with the XMRV saga. But even after XMRV, Lipkin (Columbia U) and Montoya (Stanford?) found a retrovirus in 85% of ME/CFSers examined. Lipkin discounted that, though, because they also found that retrovirus in controls. But if it were an endogenous retrovirus that was somehow triggered from latency or harmless inactivity into something more pathogenic...But, eh, that has not been demonstrated. In fact, no single pathogen has been proven across the patient population, although many have been suggested, and a few seem to hold true for parts of the population , including enteroviruses and herpes viruses.

What does all that mean? It means that the hunt for a pathogen SHOULD be on in earnest, and be endorsed and financed by government agencies.

Only, it isn't, at least not in any substantive fashion.

Same holds true with PTLDS. If you look real hard at who is studying Lyme patients who remain sick AFTER treatment, you won't find a lot of researchers with backing. And in that group I'm including individuals or agiencies - including the NIH - studying 2T positive folk. So, if it is NOT Bb keeping us sick, what is it? Broken autoimmune systems? Okay...but demonstrate that already and quit screwing around.

Back to ME/CFS, or SEID: A major hit the new IOM report took is the emphasis it placed on SYMPTOMS vs overt and measurable biological components and pathways. Detractors are concerned that the name change is much ado about nothing because it's still pretty much a shell game that pivots around self-reported symptoms... That it will not result in demands - demands that cannot be ignored because of acknowledged studies - that more monies be dedicated to researching the proven biologies already on the table. There are lots of studies out there demonstrating immune dysfunction - Ig class dysregulation, for example. Where is all the money with which to launch a full scale investigation? Where is even the dollars for replication efforts toward pre-existing studies? The US Lyme community is appalled because only about $20 million is spent annually on TBD research. In the ME/CFS community, the NIH only spends about $5 million annually.

So, if PTLDS and ME/CFS are the same, at least in terms of symptoms, and if the Old Lyme Guard has its way and gets the world to believe PTLDS describes FORMER Lyme patients who no longer are infected, then other than potentially being able to identify the trigger mechanism, how will we be any different than ME/CFS sufferers, and the battles they fight, and their outcomes - how will ours be any different, if in fact they are?

This is in great measure why I follow the struggles of ME/CFS patients.

[ChronicLyme19]

Yeh, I agree. There's this whole host of diseases like these with overlapping symptom sets that no one has identified a cause(s) for. I feel like there needs to be more data mining, and more collecting of data, even if it's subjective. Subjective data from patient reporting scales is not as good as hard numbers from a blood test, but it is still better than no data. Come up with a form, and have patients journal that everyday. You could start with a big list at first, and then narrow it down for each person. It should take 5 minutes, and for those that are very ill, have a family member help them fill it out. Do it at the same time you take your meds so it becomes routine. Hell you could even make it an online form that gets fed to the doctor everyday.

That's the one thing that has really helped me see what's working in my own treatment and find leads to chase down is keeping an accurate form to record what's going on. It's so much easier to see what's working and what's not, or what symptoms are very gradually changing this way.

I feel like once you got it a little more quantified somehow, you could start going through the data and finding trends in the own patients reporting and in the group reporting. You could sort out different subsets like you do in a DOE where you can have overlapping symptoms, but different causes. This stuff is so complicated and convoluted that some of these relationships are not going to be seen unless you pull them out through the statistics. Good doctors can do this, but sometimes the relationships are so complex you aren't going to be able to figure it out on your own. Visual aids of the data is a great way to find relationships as well. Some thing are much easier visually than staring at numbers.

If you can't even clearly define your subgroups, like Lyme, CFS, ME etc, how are you ever supposed to track down a cause/causes of stuff this complicated?

[duncan]

I fear we must move beyond symptoms.

Serious, meaningful research into physical biomarkers - in Lyme and FM and ME/CFS - is hindered by decades of crappy diagnostic criteria that have left the landscape cratered and virtually impassable , and left possibly bereft of hope by rigid and entrenched and intractable political and financial alliances.

Hire me for a day and I will fire many as I can, and maybe we can start again from scratch. I can't promise, though, that I will necessarily be fair. Lots of people have pissed me off. But what I lack in fairness, I will make up for in thoroughness.