This is, of course, a thyroid forum. But all too many members mention Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other disorders.
I'm posting this paper very largely for the Treating comorbidities section which, though short, is highly relevant to a considerable number of members.
Please try to keep discussion to the thyroid side of things simply because we CANNOT cover everything. Replying will be turned off if it meanders too far from home.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic, debilitating disease characterised by a wide range of symptoms that severely impact all aspects of life. Despite its significant prevalence, ME/CFS remains one of the most understudied and misunderstood conditions in modern medicine. ME/CFS lacks standardised diagnostic criteria owing to variations in both inclusion and exclusion criteria across different diagnostic guidelines, and furthermore, there are currently no effective treatments available. Moving beyond the traditional fragmented perspectives that have limited our understanding and management of the disease, our analysis of current information on ME/CFS represents a significant paradigm shift by synthesising the disease’s multifactorial origins into a cohesive model. We discuss how ME/CFS emerges from an intricate web of genetic vulnerabilities and environmental triggers, notably viral infections, leading to a complex series of pathological responses including immune dysregulation, chronic inflammation, gut dysbiosis, and metabolic disturbances. This comprehensive model not only advances our understanding of ME/CFS’s pathophysiology but also opens new avenues for research and potential therapeutic strategies. By integrating these disparate elements, our work emphasises the necessity of a holistic approach to diagnosing, researching, and treating ME/CFS, urging the scientific community to reconsider the disease’s complexity and the multifaceted approach required for its study and management.
Treating comorbidities
ME/CFS displays an overlap with several autoimmune or immune-mediated diseases that also have chronic fatigue as a main symptom, such as Hashimoto’s thyroiditis (530), fibromyalgia (FM) (532, 554–557), Mast Cell Activation Disorder (532), sleep apnoea (532), IBS (532), secondary depression or anxiety (532), Ehlers-Danlos syndrome (532), and PoTS (532, 558–563). One ME/CFS speciality clinic found 84% of 960 patients presented with at least one other comorbid condition, often resulting in worsened health (3). Hence, more research on ME/CFS is required to separate it from other diseases that are also associated with chronic fatigue. Treating some of these comorbidities will not cure ME/CFS but might alleviate some of their symptoms and improve some quality of life (23).
thank You helvella, I am at the moment taking part in the ME study hoping that it will help to find some answers and help others for the future. Absolutely awful condition though to me it feels like a backlash punishment for doing any activity wether it be physical or mental & Iv had it that long I can only try to manage it by pacing which is frustrating as sometimes when you do feel slightly more energetic you want to do everything you can that needs to be done not knowing when you will next be able to do it again, and knowing the consequences will be punishment that is not all good it’s a vicious cycle and very debilitating condition that no one could understand unless they had it.
Treating some of these comorbidities ( PROPERLY ) will not cure ME/CFS but might alleviate some of their symptoms and improve some quality of life (23).
my autoimmune hypo was considered 'treated' by the CFS/ ME service i saw.
and to be fair i was on 150mcg levo/ TSH stable between 0.06 and 0.2 [0.02 -6] / fT4 about 80% ..... (but GP had 'failed to mention' that T3 existed and was an option at the time).
other than ticking the box for 'TSH in range and stable on levothyroxine' my co-morbidity was never considered or even discussed , not once ... because it was considered 'treated'.
I’m the same. My hypo was “treated” according to my GP before my ME/CFS diagnosis because my TSH was just below range so no more Levo. But not once has the Chronic Fatigue Centre at the hospital mentioned my Hypo even though there is a study that I’ve posted here before about low T3 levels in ME/CFS patients. 😡
It seems such an obvious thing to have a holistic approach 🤷♀️
I was given a cfs referral back in March before ever even having a first levothyroxine dose increase. I feel really brushed off. I have decided to keep the referral in case they cab help me get pointed in the right direction. But I don't want to be given a cfs diagnosis until everything else is ruled out with my thyroid.
I tried to read that article, and got pretty far, but it's over my head and too detailed.
I find that is often the case. But often go for a very fast scan-read. Then put it on one side and ignore it for a while before returning to it. Especially when the comments highlight important bits.
I have noticed an oddity in diagnosis of various alleged disease processes. It’s amazing how ‘precious’ people can be of their diagnosis. I have definitely felt it with my diagnosis of hypothyroidism. Before that, it was a jumble of different ‘conditions’. CFS and Fibromyalgia were at the top of my self diagnosis list but I had no wish to bother with either, because basically I knew there was no treatment. In my mind both diagnoses led to just ‘parking’ me there because medics had no idea where else to put me. It was somehow for their convenience and I had no inclination to help them pigeon hole me there.
As it turned out they never could help with anything else either and I still got ‘parked’.
I have no idea to this day whether these are truly separate conditions. A body reacts how a body reacts to certain viruses it seems but anyone (and no disrespect to anyone who thinks differently) can see the connections/similarities in CFS/Fibromyalgia/ME. Even a friend of mine with MS who does not seem to be worsening at the alarming rate some do, experiences remarkably similar day to day symptoms as myself.
Back to the diagnosis. Maybe the ‘preciousness/protectiveness’ is associated with the time we have to wait for diagnosis etc. But it’s also about hope. Does anyone recall Elizabeth Barret Browning (I think) and tales of her on her daybed, amusing visitors? She was young and clever and beautiful. I think she had TB. There is nothing glamorous about any of these diagnoses. Perhaps this is a contributing factor to disinterest from medics. I distinctly get that impression.
Reams has been written about heart/thyroid connection but I am seeing a cardiologist, one I sought out myself, who disappointingly told me, “I leave endocrinology to endocrinologists”.
I find it terribly difficult to get my head around that level of decision making. However cardiologists are heroes of the medical profession. Now that’s considered glamorous! Mmmm.
Also, the time it takes to take in the meaning of a diagnosis. From quite possibly knowing nothing, to slowly starting to understand, getting a grip of the language, the science. Then it all comes crashing down because you haven't got that, you've got something else.
If the something else is amenable to treatment - and that treatment can be received quickly and is effective - probably all good.
If the change of your diagnosis is in the context of the whole medical establishment having to turn around and change everything they do, that alone could take years. Imagine some with thyroid issues are found to have a specific virus that is the causative agent. Then getting hold of the appropriate anti-viral would become the stumbling block. Especially as it will take years to be approved, will likely then take years to be funded, and in the meantime you end up waiting, waiting, waiting for treatment.
Ironically, assuming the thyroid issue just needs appropriate thyroid hormones might be a better position to be in. Despite our T3 issues, at least there is something to take which might improve our state.
I want to wholeheartedly agree on your last point. It’s how it should be. Unfortunately that too is problematic. I think I could be going on about 55 years with signs and symptoms of hypothyroidism but only three years into diagnosis.
I was referred to a CFS clinic around five years ago, maybe longer. I was given a big battery of blood tests before being diagnosed, theoretically to rule out all these possible causes of fatigue. But for thyroid all I got was a TSH test, so I assume for all the other conditions it would have been the cheapest, most basic and most fallible test.
I actually had a very good experience in the CFS clinic. It's the only medical setting where I've ever had my disability due to thyroid illness taken seriously. A lot was about strategies for coping with lack of mobility, low stamina, etc. There were also several optional extras laid on, relaxation and art therapy classes, a patient support group, and I had 6 weekly meetings with an occupational therapist who was very knowledgeable about fatigue, for a year or two. Kind of structured like a therapy session, we would talk about big events I had coming up, like a family wedding, and how to cope with that, then how it had gone. They were also great in talking to employers and providing documents needed for benefits, and had a lot of understanding of those kinds of logistical needs.
There were definitely a few moments where more unpleasant things happened, a lot of services were provided with a shoe string budget and very little training. But overall there were a lot of hidden gems and a very valuable experience. My understanding is this varies a lot by location. I've heard of even better resourced centres where patients attend weekly or even daily, although my guess would be most places offer less.
But yes, something I always thought is that the best thing they could have offered (but of course didn't) would be to go more deeply into some of the other illnesses that could possibly explain fatigue, and dig into whether patients might have had more difficult to identify illnesses. I met a lot of patients there who had thyroid illness, hardly anyone had had their vitamins tested or any other basics. "Relying on adrenaline" was a phrase bandied about a lot by staff, but none of them knew anything about adrenals or cortisol, even though I felt they did know bits and pieces about them, they just didn't commit to making any real recommendations. One patient I met there eventually found out they had narcolepsy and that explained their fatigue. I always offered to help with vitamins, or to look at thyroid patients' results and help them to interpret. But no one ever showed any interest. I didn't like to push, so I never even knew if any of the thyroid patients had tried T3, for example. My guess would be not.
I suppose a big problem, as in all of medicine, is that people end up in silos. The fatigue was treated very much in a talk therapy style, with emotional and practical support. There wasn't any medical intervention type stuff in the department I attended. Not even weights, blood pressures, etc. The expertise of all the staff leaned in that direction. They clearly didn't have the training to investigate different comorbidities and go deeply into patients' medical history. Whereas what would be the most useful would be a very expert practitioner with a very broad knowledge of the range of illnesses that can cause fatigue.
Pretty much same as me, but I did have intensive blood testing done had so many tests, including all my thyroid tests that endocrinology do, testing but I already had hypothyroidism for years and this came on me years later so although some seem related mine wasn’t, hospital was really helpful for me and although can’t cure it I have learnt to manage it best I can, but first step I had to give up work as I was work to bed everyday that was my life which was no life as couldn’t enjoy anything whereas now with pacing I can save energy for the things I need to do and then i have to take time to recover later
ME/CFS and Fibromyalgia are generally associated with low T3 levels, which is a cogent argument for T3 testing. But we know what happens when we try and advocate for it...
I no it definitely shoukd be tested although I have both ME & fibro and hypothyroidism and I’m on t3 and doesn’t change the ME or fibro so doesn’t help everyone unfortunately
Daily B12 & NDT relieved much of my symptoms, as well as a handful of supplements every day. I’m currently trying LDN. GPs & endo’s weren’t much use so I’m grateful for all the information I’ve had on this forum.
I’m glad you found something that helped you, I’m on levo/lio and take all my vitamins, tried everything over the years but nothing really helps energy levels have to be managed, but the muscle pain through the night is awful, used magnesium gel, volturol but only heat will soothe the pain a little, yes this forum is excellent for help advice and empathy
Magnesium is great for preventing cramp, I used to love a daily soak in a hot bath. I'd be lost without an infrared lamp! Unless there's a heatwave, I use it first thing in the morning, at bedtime, & often in-between.
For anyone looking for comprehensive information, a blog and forum about ME etc I thoroughly recommend the website healthrising.com. It’s a charity and keeps up to date with research et al. Excellent blog worth subscribing to.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
A New Thyroid Subset For Chronic Fatigue Syndrome (ME/CFS)? The Low T3 Syndrome Group by Cort Johnson www.prohealth.com
Do you think Chronic Fatigue Syndrome exists?
Anemia of chronic disease
