Evidence of Neurological Abnormalities in ME Suppressed in the IOM "ME/CFS" R

[jimells]

Yesterday a doctor told me this was all psychosomatic. I'm just devastated again.

It certainly is demoralizing. And then the demoralized patient appears "depressed" to the "physician", who now has a CYA excuse for not treating symptoms: "The patient refuses to consider antidepressants, is non-compliant, and lacks insight"

When a new doctor gave me the psychobabble recently, I told her that there is a simple test to see if patients like us are depressed: ask us what we would do if we were to be cured tomorrow. But it fell on deaf ears.

 

[halcyon]

On autopsy data, not every ME patient, if I recall correctly, shows neuroinflammation. I think it was one in four? There is better data in the one animal study, but sadly all such studies are tiny ... they will be automatically rejected in today's scientific climate.

Given the difficulties and uncertainties surrounding diagnosis, perhaps the patients that didn't show evidence of this actually didn't have ME then.

I don't understand why we need to provide evidence that it is encephalomyelitis when the detractors don't have to provide evidence that it isn't. The disease was named thusly due to the clinical signs and symptoms present. Ramsay was 100% confident in calling it an encephalomyelitis.

“ there was clear agreement that myalgic encephalomyelitis is a distinct nosological entity. Other terms used to describe the disease were rejected as unsatisfactory for various reasons: the cardinal, clinical features show that the disorder is an encephalomyelitis….Some authors have attempted to dismiss this disease as hysterical, but the evidence now makes such a tenet unacceptable….The organic basis is clear – from the finding that the putative agent can be transferred to monkeys, the detection of an increased urinary output of creatine, the persistent findings of abnormal lymphocytes in the peripheral blood of some patients, the presence of lymphocytes and increased protein concentration in the cerebrospinal fluid of occasional patients, and the neurological findings” (BMJ 3rd June 1978).

 

[SOC]

Given the difficulties and uncertainties surrounding diagnosis, perhaps the patients that didn't show evidence of this actually didn't have ME then.

I don't understand why we need to provide evidence that it is encephalomyelitis when the detractors don't have to provide evidence that it isn't. The disease was named thusly due to the clinical signs and symptoms present. Ramsay was 100% confident in calling it an encephalomyelitis.

I agree with your logic, but we're not dealing with logic. We're dealing with prejudice. The medical community is simply not going to accept encephalomyelitis at this time without evidence it considers 100% definitive. We can't provide that and since they have the power to name our illness and we don't, they win. We can fight that battle, but our odds of winning are miniscule. We have limited money and energy; we need to choose our battles.

I'm fervently wishing for some clear marker to be identified soon so that we can get a sensible name we can all get behind. Until then we're spitting into the wind.

 

[Sing]

We are all in the same fight and have had many similar experiences. I know how shocking and difficult it can be when a doctor arrogantly dismisses our symptoms and disease name. If it isn't possible to go to one of the few specialists, then it is necessary to find other specialists who will at least accurately diagnose and treat some of the particular aspects of this disease, as well as--hopefully--a family practitioner, internist or the like who is at least respectful and open minded. It took me years to recover from my initital rebuffs, to learn to organize for these appointments and to find a few helpful doctors. Best I can do and for now, with the state of medical knowledge what it is, good enough.

No longer new to this game

 

[Sing]

A doctor friend (social) just looked at my strange cold white-gray finger with the purple color at the base and said, " you have Raynaud's!" I guess i have had these kinds of symptoms before but not realized that is what they are. I have a whole host of autonomic nervous system problems. A neurologist called what i have PAF. Am typing lying down excuse the trouble. The neurologist wondered if i might have MSA but then went back to PAF. I know that what I have is ME. This is the big picture but the autonomic dysfunctions fall within it. Help for some of us can come from those dysautonomic specialists, by the way, whose specialty seems to involve more scientific and research attention than we usually get. While the woods aren't full of them, there are more of them around than ME/CFS specialists, and they will at least recognize and respect neurological difficulties and are up on all the medications.

 

[kangaSue]

A doctor friend (social) just looked at my strange cold white-gray finger with the purple color at the base and said, " you have Raynaud's!" I guess i have had these kinds of symptoms before but not realized that is what they are. I have a whole host of autonomic nervous system problems. A neurologist called what i have PAF. Am typing lying down excuse the trouble. The neurologist wondered if i might have MSA but then went back to PAF. I know that what I have is ME. This is the big picture but the autonomic dysfunctions fall within it. Help for some of us can come from those dysautonomic specialists, by the way, whose specialty seems to involve more scientific and research attention than we usually get. While the woods aren't full of them, there are more of them around than ME/CFS specialists, and they will at least recognize and respect neurological difficulties and are up on all the medications.

I noticed you mentioned PAF, I take it that refers to Pure Autonomic Failure. There is another condition with various autonomic dysfunctions, similar to that found in ME, that mimics PAF called Autoimmune Autonomic Ganglionopathy. AAG is. It can be of sudden onset or a gradually worsening progression of symptoms, most often because of antibodies to nicotonic acetylcholine receptors
http://www.ncbi.nlm.nih.gov/pubmed/23568990
http://www.hindawi.com/journals/ad/2013/549465/

 

[Sing]

Thanks @kangaSue I wondered too if I might have AAG and tried to bring it up in an appointment but don't know what happened. I will bring it up again. I recall that on some form on which he had to write my diagnosis, or one of them, he wrote Autonomic Neuropathy.

I looked at the articles you linked. They are good, especially the last one is thorough, but it is unfortunately beyond my knowledge and understanding. I can relate to symptoms they cite b ut not enough of the technical stuff. What really helps me are videos of informed doctors explaining these types of illnesses more in layman's terms. Do you know any of those on this subject?

 

[kangaSue]

@Sing, sorry, I've never looked for any video's on the subject.

 

[Sing]

http://www.dysautonomiainternational.org/page.php?ID=124

I remembered I saw a good lecture by a Dr. Stephen Vernino and hunted for it until I found it above!

 

[kangaSue]

http://www.dysautonomiainternational.org/page.php?ID=124

I remembered I saw a good lecture by a Dr. Stephen Vernino and hunted for it until I found it above!

Thanks for that, I'll check it out. I'm usually too impatient to sift through videos, I don't feel so much like I'm wasting my time by reading through articles.

 

[halcyon]

The medical community is simply not going to accept encephalomyelitis at this time without evidence it considers 100% definitive.

They've already accepted it; the WHO in 1969 and the RSM in 1978. They don't get to take it away just because they conflated it with CFS.

More importantly, you'd have to prove that the initial insult, versus the ongoing perpetuating factors, also isn't an encephalomyelitis. This has never even been looked at properly. We don't remove the diagnosis of encephalomyelitis disseminata from a patient having symptoms but no active lesions. Why do they get to do it with ME?

 

[Izola]

What do you believe to be the case then?

I don't think its demyelinating Neuroinflammation either.

In reference to Neuroinflammation and in particular low-grade encephalitis, HSV-1 would be the number one candidate I'd say.

it

Does it have to be a demyelinating Neuroinflammation to qualify as an encephalomyelitis?

 

[Izola]

The rules of evidence were different.

Its long been the case that a government body, agency or whatever can limit the rules of evidence, limit the scope and so limit the possible outcomes. Sometimes this is a good thing, but it can be used to distort and manipulate outcomes too.

What is the origin of the "Rules of evidence" used outside of jurisprudence?

 

[alex3619]

What is the origin of the "Rules of evidence" used outside of jurisprudence?

Evidence based medicine has its own rules, but there are different sets of them, different layers of them, and different levels of compliance with them. I think the IOM has its own rules, generated internally, which would be a variant on the general theme. The purpose is to minimize bias in science, but I claim it can actually increase bias if not applied appropriately.

 

[Izola]

Evidence based medicine has its own rules, but there are different sets of them, different layers of them, and different levels of compliance with them. I think the IOM has its own rules, generated internally, which would be a variant on the general theme. The purpose is to minimize bias in science, but I claim it can actually increase bias if not applied appropriately.

Thank You. Alex 3619. I had been puzzled about your comments about the "Rules of evidence" relating to medical matters/research. My muggy brain seems to puzzle quite easily the more it nears the ME endpoint. Now I get it, in spades. Certain medical matters and justice courts. Their amazing commonality. iz