ThereseFlower
Active Member
Just checking...Has a biomarker been found that we can all get tested for in order to have documentation? Something standard that we can go to our own physician's clinic to have odered?
I believe Bhupesh Prusty put out some very false info on Twitter & everyone thought he was talking about ME/CFS & he was not, the IGM issue was in Long COVID. Long COVID is not ME/CFS & the ME/CFS community is getting now pulled into Long COVID things which is totally wrong. I also believe the term ME/CFS will end up being dropped it is highly likely all along it is Ehlers-Danlos Syndrome complications.I understand from last week’s Cambridge conference tweets there is likely to be a panel of tests rather than a specific biomarker, and it hasnt yet been scaled up and rolled out in the US, but it is being developed. Nothing is yet available anywhere else so far as I know, though several research teams have been sounding hopeful of progress soon with different things suggested. Hasnt Bhupesh Prusty just put one forward? Is that IgM levels?. Diagnosis conventionally atm is still I think on history, exam, and tests to exclude or identify anything else that could be causing chronic fatigue, though the ‘tell’ for ME/CFS will be the presence of PESE (PEM). For some reason the NICE Guidelines doesnt include MS to be ruled out or identified on that list, not sure why. I understand other conditions can sometimes cause exercise intolerance, but it may (?) be differentiated. Others will know more on this forum I expect. (This is not medical advice, I am not a doctor.)
You are primarily referring to the MTHFR gene mutation there, involving deficiency in the methylenetetrahydrofolate reductase enzyme resulting in excess homocysteine levels. I have discussed that issue elsewhere. In my past case of CFS it wouldn't have applied since it involved work exposure to a toxic solvent called trichloroethylene. In that case it would probably have helped if doctors had referred me for testing of lactate dehydrogenase levels, rather than wasting a year just reassuring me that I should go home, drink lots of water, and get plenty of rest. Actually, in my own case, testing IGG (rather than IGM) would have also helped since that was another consequence of the exposure and induced nephrotic syndrome.I believe Bhupesh Prusty put out some very false info on Twitter & everyone thought he was talking about ME/CFS & he was not, the IGM issue was in Long COVID. Long COVID is not ME/CFS & the ME/CFS community is getting now pulled into Long COVID things which is totally wrong. I also believe the term ME/CFS will end up being dropped it is highly likely all along it is Ehlers-Danlos Syndrome complications.
I would pay very close attention to the work from Tulane Hypermobility Clinic they also are on Facebook genetic mutation issues in Folate, standard folic acid in food Gluten things, additives, Doctors' synthetic folic acid, in vitamins/minerals added folic acid. 23 and me test can show A1298C & C677T & do not consume any sugar ''SUGAR IS A TOXIN'' any kinds countless hidden names, get your sugar from washed fruits/vegs. Tulane University uses Methyl B12 & Methyl Folate or Folinic Acid if one cannot tolerate the Methyl Folate.
One does not have to be hypermobile to have EDS some have HSD type some have 2 types HSD with Tenascin X or with EDS3 some have EDS4 Vascular type. Thanks to the Genius FDA who put into flour their synthetic trash folic acid back in 1989, I can imagine the damages Lawsuits now. Some even say EDS is not rare it is rarely diagnosed & as many as 60% of the World likely has Folate EDS issues...
This could be also why no one could ever find a Biomarker when all along it is a Genetic born illness passed on from parents' genes...Keep looking as well, you may be misdiagnosed, one example my friend told he had Fibro for years he has all along Myasthenia Gravis, maybe it is also linked to EDS??? It all still does not explain also the Brain Tumors in Pineal Glands being found now everywhere either
I had my IGM IGA IGG tested looking for any deficiencies even CVID/PID by a top Immunologist my IGM is perfect so are my killer cells, I even did later a full panel on IGG IGA IGM it was not raised or low, a Normal result.
The tests Davis is talking about is not even in the development stages one person in charge of this left Stanford. Davis's daughter has EDS Hypermobility & likely the family as well likely even Ron & the Son. I hope the terms ME/CFS/Fibro actually drops completely dead...
I wish all of you a treatment & Cure soon xx God bless all of you xx
Not all have high homocysteine mine is in the normal low 5's but should be higher. What diagnosis do you have now? Where did you end up getting the lactate dehydrogenase levels done? Do you have any metal allergies like nickel or cobalt?You are primarily referring to the MTHFR gene mutation there, involving deficiency in the methylenetetrahydrofolate reductase enzyme resulting in excess homocysteine levels. I have discussed that issue elsewhere. In my past case of CFS it wouldn't have applied since it involved work exposure to a toxic solvent called trichloroethylene. In that case it would probably have helped if doctors had referred me for testing of lactate dehydrogenase levels, rather than wasting a year just reassuring me that I should go home, drink lots of water, and get plenty of rest. Actually, in my own case, testing IGG (rather than IGM) would have also helped since that was another consequence of the exposure and induced nephrotic syndrome.
Unfortunately I was never able to get my original bout of chronic fatigue investigated by doctors; they were simply too lazy no matter how many I tried to consult about it. However, much later, they did diagnose the nephrotic syndrome and cancer which resulted from the toxic exposure. They refused to connect those conditions to the toxic exposure as is fairly common where I am; with the government pressuring doctors not to blame companies for such exposures.Not all have high homocysteine mine is in the normal low 5's but should be higher. What diagnosis do you have now? Where did you end up getting the lactate dehydrogenase levels done? Do you have any metal allergies like nickel or cobalt?
You sound like you are going through hell in the system, I wish you wellness and more answers soon, God bless you xx Someone also mentioned some D Lactate testing recentlyUnfortunately I was never able to get my original bout of chronic fatigue investigated by doctors; they were simply too lazy no matter how many I tried to consult about it. However, much later, they did diagnose the nephrotic syndrome and cancer which resulted from the toxic exposure. They refused to connect those conditions to the toxic exposure as is fairly common where I am; with the government pressuring doctors not to blame companies for such exposures.
My current fatigue relates to years of exposure to coating sprays, containing engineered silica nanoparticles, and exertional heat stress. The tests for lactate dehydrogenase have been performed by pathology clinics after referrals from both GP's and hospital specialists. Lactate is produced by cells producing energy without oxygen; anaerobic respiration. That is the same kind of condition which the original trichloroethylene exposure causes though, based on my test results over the last number of years, it appears my current condition likely commenced with a short term bout of acute liver failure. I have diagnoses of a range of health issues, such as myositis, Barrrett's oesophagus, and so on but trying to get a diagnosis of the base causes of my condition is still a painful process. The only things I know I am allergic to are gluten and pollen from Japanese cedar tree's.
Thanks for the thought. Yes, the lactate dehydrogenase and lactate can be a really good marker for chronic fatigue though it doesn't necessarily indicate the cause. Respiratory issues, liver issues, mitochondrial issues, etc, can all result in high levels of it. It just means that something isn't working properly in production of energy. However doctors generally completely ignore it as an indicator of health. An interstate government, here in Australia, was so frustrated by doctors ignoring levels of them that they sent out advisories to medical professionals that they needed to pay more attention to them.You sound like you are going through hell in the system, I wish you wellness and more answers soon, God bless you xx Someone also mentioned some D Lactate testing recently
Good News to know, thanksThanks for the thought. Yes, the lactate dehydrogenase and lactate can be a really good marker for chronic fatigue though it doesn't necessarily indicate the cause. Respiratory issues, liver issues, mitochondrial issues, etc, can all result in high levels of it. It just means that something isn't working properly in production of energy. However doctors generally completely ignore it as an indicator of health. An interstate government, here in Australia, was so frustrated by doctors ignoring levels of them that they sent out advisories to medical professionals that they needed to pay more attention to them.
I looked up the latest publication, 2023, by that organisation on biomarkers for myalgic encephalomyopathy. At the end of the article it states that; 'There is currently no consensus on a biomarker for ME/CFS'. https://bmcmedicine.biomedcentral.com/counter/pdf/10.1186/s12916-023-02893-9.pdf I did find some articles which detailed their identification of new biomarkers for ME but they just seemed to add to the list of other biomarkers already identified.I thought that the National Centre for Neuroimmunology and Emerging Diseases (NCNED) Gold Coast Australia had found a biomarker for CFS. It might pay to check with them 61 756789283 ncned@griffith.edu.au
Cheers Howard
Chronic fatigue or ME? Sorry I'm confused, one is a symptom the other a disease. By the by, I managed to get an apology from the GMC recently for using the highly confusing 'chronic fatigue syndrome' to refer to ME. I flagged it up as causing offence to many (not all) ME patients, because of its association with psychosomatic approach and being used derogatively. They have acknowledged getting the name ME used is an inclusivity issue. I realise we will have to settle in the UK for the time being with ME/CFS as this is what NICE uses, but I'm going to try to raise it with NICE as an inclusivity issue when I've got the spoons.Thanks for the thought. Yes, the lactate dehydrogenase and lactate can be a really good marker for chronic fatigue though it doesn't necessarily indicate the cause. Respiratory issues, liver issues, mitochondrial issues, etc, can all result in high levels of it. It just means that something isn't working properly in production of energy. However doctors generally completely ignore it as an indicator of health. An interstate government, here in Australia, was so frustrated by doctors ignoring levels of them that they sent out advisories to medical professionals that they needed to pay more attention to them.
Sorry, some confusion -I am not concerned with chronic fatigue, that's a symptom that arises from countless conditions, including arthritis, fibro, cancer and cancer treatment, MS and depression. In order to, for example, save children with ME from being forced to do aggressive exercise on the grounds the psych thinks there's nothing wrong with them, we need the markers for Myalgic Encephalomyelitis and LC/ME. That's the complex, multisystem, disease with diagnostic criteria ICC , CCC, or similar.I think that the problem is that there are so many different causes of chronic fatigue that it's difficult to specifically prove every case. https://www.s4me.info/threads/bioma...a-systematic-review-2023-maksoud-et-al.33470/
More broken hope, I am convinced the majority of Researchers are in this for the incoming funding not finding any answers, they all lie constantly & never come up with anything concrete at all.I thought that the National Centre for Neuroimmunology and Emerging Diseases (NCNED) Gold Coast Australia had found a biomarker for CFS. It might pay to check with them 61 756789283 ncned@griffith.edu.au
Cheers Howard
Sorry if I use the term CFS. I on the older side and that was the only term used when I was growing up. ME is still a relatively new terminology from my perspective so it's difficult for me to think of it as that. Yes, CSF is a symptom of ME but I think that the lines between the two still blur because of medical reluctance to diagnose the condition. It has been my own experience that most doctors want to avoid the subject of conditions like these so it can be really difficult to even obtain a referral for investigations of them. Without a diagnosis someone with ME still only has CFS if the doctors even choose to acknowledge the fatigue. It's just one of those really blurred lines which challenge us in life. Back when I was exposed to the trichloroethylene which induced my own condition I recognise that the symptoms should have been investigated and diagnosed as one or both of the conditions but instead doctors chose to completely ignore the issues, flagging me as a hypochondriac. Trichloroethylene is a systemic toxin, capable of causing damage throughout the body, so doctors choosing to completely ignore and dismiss the consequences of the exposure was devastating to my life at the time. When I learnt the effects of the exposure, and their effects on my health, no doctor was interested in hearing though, since another bout of work related toxic exposures destroyed my health they have finally started to listen. If you think being discriminated against for people referring to ME as CFS is bad then I guarantee you that having it called hypochondria is much worse.Sorry, some confusion -I am not concerned with chronic fatigue, that's a symptom that arises from countless conditions, including arthritis, fibro, cancer and cancer treatment, MS and depression. In order to, for example, save children with ME from being forced to do aggressive exercise on the grounds the psych thinks there's nothing wrong with them, we need the markers for Myalgic Encephalomyelitis and LC/ME. That's the complex, multisystem, disease with diagnostic criteria ICC , CCC, or similar.
It is 100% Ehlers Danlos Syndrome typesSorry if I use the term CFS. I on the older side and that was the only term used when I was growing up. ME is still a relatively new terminology from my perspective so it's difficult for me to think of it as that. Yes, CSF is a symptom of ME but I think that the lines between the two still blur because of medical reluctance to diagnose the condition. It has been my own experience that most doctors want to avoid the subject of conditions like these so it can be really difficult to even obtain a referral for investigations of them. Without a diagnosis someone with ME still only has CFS if the doctors even choose to acknowledge the fatigue. It's just one of those really blurred lines which challenge us in life. Back when I was exposed to the trichloroethylene which induced my own condition I recognise that the symptoms should have been investigated and diagnosed as one or both of the conditions but instead doctors chose to completely ignore the issues, flagging me as a hypochondriac. Trichloroethylene is a systemic toxin, capable of causing damage throughout the body, so doctors choosing to completely ignore and dismiss the consequences of the exposure was devastating to my life at the time. When I learnt the effects of the exposure, and their effects on my health, no doctor was interested in hearing though, since another bout of work related toxic exposures destroyed my health they have finally started to listen. If you think being discriminated against for people referring to ME as CFS is bad then I guarantee you that having it called hypochondria is much worse.
Howard, Trying to find some information on long covid for a friend I found this article, which you were likely to be referring to. The TRPM-7 receptor dysfunction was found by Griffith University in people with ME. https://www.mdpi.com/2218-273X/13/7/1039 The issue is finding a way in which this can be used to diagnose people with the disease.I thought that the National Centre for Neuroimmunology and Emerging Diseases (NCNED) Gold Coast Australia had found a biomarker for CFS. It might pay to check with them 61 756789283 ncned@griffith.edu.au
Cheers Howard
No, and unlikely ever to have a single marker found. ME/CFS is partially generic (Genes) which was activated by environmental factors (epigenetics). ME/CFS is a basket that a lot of different conditions is dropped into.Just checking...Has a biomarker been found that we can all get tested for in order to have documentation? Something standard that we can go to our own physician's clinic to have odered?