OT :Interesting study of CFS
Interesting I wonder what avenues they are going to look at next in terms of diet.
I read somewhere that Sweden have rejected the low fat dogma. Here's a link but not the place I read it - healthimpactnews.com/2013/s...
Not sure if diet has much to do it, tho if one cannot use carbs as energy then it is useless to eat carbs.
In Norway they start clinical trial with cancer medication that destroys the B cells that causes body to attack against the process of using sugar as energy. So it is again another autoimmune reaction where body destroys itself, tho as it was admitted it is not just one gene or thing causing it as its not one thing affecting hibernation either, its more complicated issue.
I have read in the past that conditions like fibro and cfs were un-named/unknown before the introduction of the blood tests and TSH.
Nowadays, I assume, that the patients remained undiagnosed due to the TSH not reaching a high enough figure. I've just searched and this has come up.
We did, though, have fibrositis, which many sources claim was renamed as fibromyalgia!
(I do remember someone from the early 1960s who had fibrositis - but I did not understand what it was.)
I have read that CFS/fibromyalgia has been found 18?? something or back then it was called neurasthenia or something, at least the symptoms were the same. How helpful I am remembering bits of something and writing about it lol
Very useful indeed! Neurasthenia is something we occasionally see mentioned, but that it all we see. Hadn't really associated it with fibromyalgia or CFS - I guess because that is not the focus of my thoughts.
This paper is in German - so have not gone further than to read its abstract. Seems quite, umm, germane to the discussion.
Fortschr Neurol Psychiatr. 2002 Nov;70(11):570-82.
[On the history of the concept neurasthenia and its modern variants chronic-fatigue-syndrome, fibromyalgia and multiple chemical sensitivities].
[Article in German]
• 1Klinikum der Philipps-Universität Marburg, Klinik für Psychiatrie und Psychotherapie, Germany.
This article deals with the history of the terminological and nosological development of the concept neurasthenia introduced in 1869 by George Miller Beard and in particular with its reappearance in western medicine in the 1980 s. Beginning with its predecessors in antiquity and continuing with hypochondria, which became a fashionable disease in the 18 th century, the concept neurasthenia reached a high point and world-wide medical acceptance at the end of the 19 th/beginning of the 20 th century. However, between the 1930 s and 1960 s it declined in popularity and gradually disappeared until finally it only had a rudimentary nosological role in the term "pseudoneurasthenia". In the countries of the Far East, on the contrary, the concept of neurasthenia has been in continual use since its importation in the first decades of the last century. In the 1980 s, when an interest in the symptoms of chronic fatigue was reawakened in western medicine, the concept neurasthenia reappeared, this time to define the particular form of a neurotic disorder. Parallel to these developments increasing importance was attached to clinical descriptions of illnesses which on account of their similarity to the symptoms of neurasthenia could be termed modern variants of the concept neurasthenia. These are "Chronic-Fatigue-Syndrome", "Fibromyalgia" and "Multiple Chemical Sensitivities" which have more or less adopted the organic inheritance of Beard's former concept of neurasthenia, despite the fact that so far the question of organicity could not be decisively answered in a single case. In order to clarify possible influences on the development of the concept neurasthenia and its variants, the theories and ideas of E. Shorter, medical historian at the University of Toronto, are discussed in the final part of the article, whereby the particular cultural background in each case has a decisive influence on the manifestation of the psychosomatic symptoms.
Very good. I don't know how you suss these things out Helvella
So in and around 1869 - before the discovery of how to treat hypothyroidism and/or before it was named, did they invent the "pseudoneurasthenia" because people were complaining about 'mysterious symptoms' and very slowly died ? then the ndt was introduced in 1892 and the word then fell out of favour (due to ndt resolving pain etc). However, in the 1980s the name came into favour again and was this due to the introduction of levo in the 60's which, if we remained undiagnosed we had pain plus other symptoms and these symptoms/pains were finally diagnosed/recognised again in the 80's and we still have them today.???
Many of those who suffer have never taken any thyroid hormone at all.
Perhaps at least some would improve by taking one or other thyroid hormone medication - but it is, I feel, difficult to associate the disorder (or disorders? not at all clear how many we might eventually decide actually exist) with changes in thyroid hormone treatments.
There is also the possibility that thyroid hormone might be seen to help some sufferers even if the cause is not actually inadequate thyroid hormone. (Can't help thinking of B12 being used in cyanide poisoning - it just happens to work.)
I only had widespread and chronic pain when I was given levothyroxine. I cannot figure that out.
Yes, B12 is a good point and it is said also that it can help prevent dementia/alzeimers if it is extremely low in our body.
I googled around and found out first records from neurasthenia are from 16th especially women suffering from symptoms that these days would indicate CFS, MS and thyroid failure.
I guess it's a combination of viral and bacterial infections and as it mostly were women postpartum thyroiditis.
And if as one finnish endo said there are about 50 different genes affecting thyroid function then there are at least 50 different ways how thyroid failure develops.
Then comes evolution we inherit broken or working genes which determines how we react to toxins, environment and infections. So it could be possible that outcome is either thyroid failure or something else. So some end up with somewhat treatable illness and some end up not getting any benefit from balancing thyroid as something is preventing it.
I will write a better example of it a bit later.
So back to that example I mentioned earlier.
Unfortunately this involves only one bacteria which is familiar to me for obvious reasons... Yersinia enterocolitica, yes I am a victim of it
I have been trying to dig information of ye as much as possible, but its hard to find, its barely studied, its known and its common, but nobody has cared about it much.
I run into this study and it made me ask why in the world it isnt studied better if it is possibly far more harmful than thought.
"Yersinia enterocolitica: an inducer of chronic inflammation.
Saebø A1, Lassen J.
The aim of the present study was to elucidate the connection between yersiniosis and chronic inflammation. During the period 1974-83, Yersinia enterocolitica infection was diagnosed in 458 hospitalized patients by antibody response, or isolation. The patients were followed for 4-14 years (1987); 160 were readmitted with chronic disease. Fifty-three patients had persistent joint complaints, 18 developed ankylosing spondylitis, 14 rheumatoid arthritis, and 17 iridocyclitis. Thirty-eight patients suffered from chronic abdominal pain, and another 28 from chronic diarrhoea. Two who underwent proctocolectomy microscopically had ulcerative colitis. Eleven patients developed neurological disease; others developed conditions such as chronic nephritis, thyroid disease, insulin-dependent diabetes, etc. Chronic hepatitis, found in 22 patients, was significantly correlated with positive test for antinuclear antibody and rheumatoid factor, and with death. Several patients developed chronic multiorgan disease, probably with chronic hepatitis as pivot. Regarding the whole material, the difference between observed and expected cumulative survival rates remained significant for 8 years (0.9189 < 0.9456; p < 0.025), indicating a substantial impact on long-term survival exerted by chronic yersiniosis."
Since not much fuss about YE.
I am still alive after having it some point in my life between 1979-1992. 1992 I had first record of high antibodies, still had them 2002. So mine is/was chronic. I am quite content and pretty sure that is the root cause of my issues.
So what I am trying to say here is that one bacterial or viral infection could lead to many different outcomes as, first of all we all are individuals with individual set of genes and second of all exposed to different type of environmental factors that causes acquired mutations in genes.
So there could be a group of people having same infection, but with different symptoms. Years ago it would have been harder to identify that it was same infection as the outcome varies when these other conditions develop later. These other conditions could then be seen as one and no way to figure out what triggered them. So why not, they must be neurasthenia as it was mostly women suffering from them. Women were waste of space anyway
This is why I think there is so much troubles to identify the cause of CFS as it can have so many different pathways and it has so many different faces. Like patients who developed multi organ failure after YE infection probably fit in criteria of CFS. And mostly because nobody seems to care much about CFS, not long ago it was called yuppie flu.
So there are so many different factors that affect, but regardless of the illness for example NDT could have worked for many thyroid illness type of illnesses because of the different pathway.
For one it was inherited gene mutation XX that can control a bunch of cells that could be responsible for thyroid function, and for other one it was that one poor acquired mutation in single cell that controls possibly something else not so important function , but has straightforward effect to bunch of cells that control some other thyroid function.
Same outcome and both benefit from thyroid medication. Other one had vulnerability which would have lead to thyroid failure anyway and other one was just so unlucky to be exposed to something.
And lets not forget the third one, who has it all and more , but wont benefit from thyroid medication. Why not? Because he might have been even more unluckier and caught something that prevents thyroid medication from working and we just don't know what it is and how to fix it. So he has just CFS and hypothyroidism is ruled out as medication wont work even though he would be very hypo and would eventually die.
I had never heard of that condition previously but I do know my daughter got severe food poisoning which I now believe is the root cause (looking back) for her severe autoimmune conditions. Some things must act as triggers.
I am sorry you also that you have had a 'trigger' which might have caused your clinical symptoms.
I never had any symptoms of food poisoning as for some it only causes mild abdominal pain. I got swollen knee , tonsillitis and high fever. Eventually one doctor tested YE even though it was considered very rare in finland. We Scandinavians have higher tendency to get reactive arthritis from YE. Salmonella affects the same way.
It indeed is a nasty bug as it can hide in your system which happened to me.
Bacteria causing food poisoning can alter your gut bacteria for good and cause "scarring" in immune system. So you probably are right suspecting it is a root cause for your daughter's illness.
I'm sorry to hear your daughter has severe autoimmune conditions. I was lucky to dodge the bullet , my knee was ruined because of multiple cortisone injections , but got it fixed and now I only suffer from poor thyroid function.
I hope you still don't understand what it is I remember quite a few people suffered from it.
If I remember correctly (??) it wasn't widespread but in a particular area.
I agree, but I find it good they do actually find some "evidence" that CFS is "real" regardless of the cause. These type of findings wont rule out the possibility it being as you said its just undiagnosed thyroid issue. So called CFS is just not studied properly I think, so the connection between for example thyroid issues might not just have been found yet.
As they said the pathway is more complicated than just one thing they have found. It could at least be helpful to develop tests that would be hopefully easy to run. So if you had this test done with other tests it could point you have issue with using carbs as energy and then the next step would be to find out why. But at least you would not be just called hypocondriac.
We all do know that with thyroid issues energy is a major thing, I wonder if the same test done to hypo/hashi would give same result?
Anything that helps in diagnosis is probably very welcome. I guess the psychological effect of everyone around believing a real, hard, numeric lab result might have a significant positive psychological impact on the sufferer?
I think so, at least thats how I feel. Its hard to live your life when you know something is wrong, but you are not sure what it is. And always the same battle with each doctor is it mental illness or not. That if something is tiring and causing more anxiety and depression to anyone going through it.
I am not saying it is not 'real' but that maybe in the past NDT helped as people were diagnosed upon symptoms only.
Exactly. These days hard evidence is needed, unfortunately.
TT. You may find it worth reading. Sending positive thoughts for your health to all. ncbi...
and ATOS to recognise Fibromyalgia and Chronic Fatigue Syndrome as seriously debilitating illnesses as...
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