From twitter and as per my comment in the article this is exciting but needs to cover a lot more ground to be validated and replicated and then actually bear fruit. It does not mean fibro is an autoimmune condition but it does make this conversation much more interesting.
New research suggests #fibromyalgia could be an autoimmune condition, with potential implications for #ME and #LongCovid theguardian.com/society/202...
Thank you so much for letting us know this. There is hope....
Thanks for posting this desquinn. Interesting article. As you stated in the article, the hypothesis that Fibromyalgia is an autoimmune disorder has been researched a few times in the past.
It would make it very interesting if there was causation there. It could mean a possible cure if this was the case.
Obviously, this is going to take a long time to complete the study and do more research on, right through to generating novel treatments.
Can you remember what it's like to live without pain? I sometimes have dreams where I don't have Fibro. I feel so happy for a few seconds after I wake up, then BAM!, back to reality and the pain hits! (wryly smiling to myself)
desquinnPartnerVolunteerFMAUK Trustee• in reply to
Whether it is CNS or ai that is at the root of this it does not matter as long a we get to the bottom of it 😊
Thankyou.I wondered with so many cases of long covid , more research into these symptoms would be researched, and hopefully would help fibro sufferers along the way.🤞
We need more medical practitioners to take these issues more seriously.
desquinnPartnerVolunteerFMAUK Trustee• in reply toBruton
this is not really related to long covid. The paper makes one tangential link. Also this research has been going on for years with a video in 2019 about it but the publication of the peer reviewed paper is a good step. Will need to see how it progresses but there is still a lot more work to be done.
My doctors, including my rheumatologist don't agree with you about that. I was diagnosed with fibro about 8 years ago. My rheumatologist told me before long covid came on our radar that, according to my blood test, I have an autoimmune illness. He also agreed with me that the enormous interest in long covid would help fibromyalgia sufferers.
the post you are replying to was me saying the research is not related to long covid which again I do not believe this research is in fact related to covid and was just mentioned in passing but please read the paper and come back.
As to your rheumatologist doing a blood test and detecting that you have an autoimmune condition then this would not be fibro for 2 possible reasons. Fibro cannot be detected with a blood test (fm/a not withstanding) and if they saw indicators that suggest it is an autoimmune condition then it will be another one and worth talking to them about it.
Secondly I would say that we are a long way from being able to say that fibro is an autoimmune condition and this is one piece of research. There has been a lot of time spent on trying to find out if fibro is an AI condition. There was nothing that backed this up. Other research (quite a bit) however does support the CNS angle.
I do not care which it is and would be happy if it is both or neither if they make strides in understanding it, diagnosing it easier, legitimising it, and not least treating it.
Also remember that it is very common to have fibro and a comorbid condition that is an AI condition so there will be stratification within our population. We will find out more as research goes on but as with any new research..... One piece of research in interesting but ultimately useless until it is replicated, validated and understood.
I remember all the hullabaloo about the mouse retrovirus that was the solution to fibro but it has come and gone. We need to be cautious and understand it will take time.
Which paper are you telling me to read? I have read the Guardian papers and lots of other papers. I am a retired scientist, but not in human medicine. You have misinterpreted what I have said. The doctor didn't diagnose fibro on the basis of the blood tests. But the blood tests did reveal an autoimmune disorder. A lot of autoimmune disorders have similar symptoms to fibro. Also, like fibro, a lot of those disorders respond favourably to the use of medical cannabis. We might not know exactly what is going on here, but something really is going on. My rheumatologist is a researcher. As far as I am concerned covid's only silver lining is the money that will come for research into long covid, some of which will be relevant one way or the other to fibromyalgia.
I opened my response to you with a thought that it may not be in reply to my comment hence my confusion and responses.
The guardian article was written from this paper : jci.org/articles/view/14420... and the conclusions from it are not related to covid.
I agree that long covid research will likely benefit fibro but think it will provide more initial benefit to ME IMO.
part of the diagnosis of fibro is searching for those AI conditions and ruling them out through blood tests. In fact it was more difficult prior to the ACR 2016 criteria to get a fibro diagnosis if you had a pre=existing AI condition.
Some conditions do respond to medical cannabis but we also know that it is not a panacea in respect to all symptoms and also does not work for everyone just like pharma drugs.
I understand and agree with what you are saying. I was told I had Fibromyalgia by my both my neurologist and rheumatologist before all my blood tests and other tests confirmed Sjorgrens and was told that the fibromyalgia was in fact secondary to that. It does have to be said that prior to both conditions being identified, I was diagnosed with an infection from the EBV family, but in actual fact had probably only succumbed to this due to the underlying AI which I’d probably lived with for years, putting random symptoms down to over working. I can see why viruses are being linked to the development of fibromyalgia but think it’s more about ‘something’ tipping the balance - effect rather than cause. One can’t discount emotional trauma/PTDS either as a contributory factor as many former service personnel have been known to develop it.
Any virus has the potential for long lasting effects (think of the many we live with that only become apparent when one is immuno-compromised) but my own feeling is that Fibromyalgia is complicated and can be caused by many different things.
I agree that the research sounds interesting and I look forward to hearing more about the progress but I don’t expect to hear that researchers have nailed one specific causative effect any time soon.
desquinnPartnerVolunteerFMAUK Trustee• in reply toAlb2
Cause and origin of fibro is one of the questions still to be answered. Virus as cause or trigger is immaterial at the moment and we do not know but it is not the only trigger.
My fibro was triggered by workplace bullying. My main symptoms are chronic pain, chronic fatigue and PTSD. The bullying went on for years and left my fight/flight system in a state of permanent stress and anxiety.
Yes, it is known that if the central nervous system and its effects on the endocrine system don’t switch off due to prolonged stress, whether physical or emotional, it can effect the functionality of the body systems. Equally, controlled research has demonstrated that 8 weeks of daily 30 minutes of mindful meditation can change the structure of the brain as seen in before and after MRI’s, as well as lowering blood pressure and benefiting other physical conditions. In particular, it appears to decrease the brain cell volume in the amygdala, the part of the brain responsible for fear and anxiety. I guess what I’m thinking here is that just as negative experiences can affect our physical bodies, so can positive. I believe there is a interdependent connection between body and mind. Apologies for waffling on, but this really interests me☺️
This stuff also interests me. I do daily meditation. It helps dampen my symptoms up to a point. I also do Tai Chi and I go for walks. Gardening, which I love and which I would expect to calm my various symptoms, causes extreme pain. In real life it is difficult to do pacing. For example, as soon as I start gardening, the pain kicks in.
I know, it’s a hard one and same here. I love gardening but there are days when it’s a no no due to pain. I think the thing that gets me is there seems to be no rhyme nor reason sometimes about when I’ll have a flare up or what’s causing it. I do yoga as I find this suits me best and keeps me supple otherwise I think i would just seize up but on a bad day I tend just to rest now and have lots of hot baths🙂
The problem with assuming it has an autoimmune etiology is that we have no idea what is the autoimmunity against, or on what? The pain sensory loop is hugely complex and if we assume pain is fibromyalgia's "primary" symptom, there goes the problem of what antibodies are actually attacking and where. So much of the autoimmune hypothesis is just that, a hypothesis. Pretty much all autoimmune disorders do.not have known cure either, so I am realistic with my hope and expectations.
one of the other aspects of the study that is of concern is that it focusses on severe pain as a necessity of understanding the mechanism. So other symptoms and lower pain are not really part of this or at least not in the paper. Its not a criticism but an important observation.
You are correct that AI disease has no cure but they do have treatments to manage the conditions such as DMSRDS or biologicals. Not everyone responds to them but they are available. It would be wonderful if this research led to new treatment. Living in constant pain is something no one should have to endure.
For myself, i wouldnt rule out all other possible explinations/ reasons. Stress anxiety and atmosphere definately exacerbate my symptoms. Today is a prime example
desquinnPartnerVolunteerFMAUK Trustee• in reply toBruton
cause and modulators which amplify or decrease symptoms may not be in anyway related but modulators are important as we can potentially change them to help us self like cutting down on stress.
the advice is all well and good but what about when you cannot implement it. I have had fibro over 30 years, diagnosed 12. I have had a lot of stress during that time and could pinpoint several incidents which could have triggered it. Both mental and physical. Either/or or both, but is immaterial when you cannot get answers. Things have deteriorated over the years as more incidents have piled in adding to the stress and anxiety. After several years dealing with my own traumas I was then carer for my mum who died 12 years ago aged 97. More recently over the last 10 years DH has has become more disabled. He has dementia, COPD, arthritis and is severely handicapped with his mobility, plus several other medical conditions. I am now his carer and things are getting progressively worse. In fact I am in a worse state than he is but the running of the house and the problems that involves, plus dealing with all the medical issues, appointments etc. all falls to me. My brain fog, stress, insomnia and anxiety makes it difficult, on top of frequent fibro flares, and as he is stubborn and argues with me a lot (not accepting my word or saying I haven't told him things) is becoming a nightmare. But I look OK and for the moment we are getting by so we are left to get on with it. I have been in contact with social services, etc. but that is not what is needed right now. So reading that we have to reduce stress is all well and good in theory, not so easy to put into practice. I feel totally overwhelmed a lot of the time and really am too exhausted to be pursuing and chasing down other avenues of help. I really feel there should be a constant follow up from the doctor when they are aware of the position we are in, but it doesn't happen, in fact you are lucky to get a doctor's appointment within a month and even then you get whichever doctor is available, not one familiar with your history. I feel I am fighting a constant battle and unfortunately losing it. There seems to be a lot of interest in long term covid and patients getting help and attention with that. Why are we not afforded the same care, when a lot of us have been suffering for years. I am so despondent bt cannot see any hope. Sad.
I said modulators and used stress as a single example as it was easy. Also applying good policy to large numbers is possible but there will also be individuals that will confound any good policy unfortunately as our condition is complex and our lives are additional complexity.
Going to the doctors and asking for pain killers that will not work at all well in an individual because their environment and depression modulate their pain and symptoms to such an extent that they are doomed to fail.
Simple answers will always be elusive as we are a complex problem.
I agree that we need more joined up care. Unfortunately the NHS has always avoided taking this illness (or series of illnesses) seriously. Presumably the local Trust filters out most requests for help leaving us in painful limbo. It's unfair and unreasonable - especially if you have spent your whole adult life paying contributions. That is why I feel hopeful about learning useful things from Long Covid. It will be more difficult to avoid treating us if the line between Long Covid treatments and Fibro treatments is accepted. If that doesn't happen, I don't ever expect there to be real help for fibro and ME sufferers.
Would like to add a comment from Kim Lawson who is a researcher and leads our Medical advisory board
"Kim LawsonThe work of Goebel et al that has been recently published suggests that patients with fibromyalgia have autoreactive antibodies and thereby the condition may have characteristics of an autoimmune disease. We must recognise the two conditionals, ie ‘suggests’ and ‘may’. This is interesting work that adds to the complexity of fibromyalgia but the outcomes do not as yet classify fibromyalgia as an autoimmune disease.
This work does raise many as yet unanswered question, as recognised by the authors of the study. It is also important to recognise that immune involvement, immune-related, or other such expressions, does not mean or necessarily support the classification of autoimmune disease.
Unfortunately, statements are often made related to fibromyalgia that are not supported by evidence or are taken out of context and can be misleading for those with the condition and their families/carers/friends. In addition to this study there is a wealth of research that has been and is being carried out on fibromyalgia, which needs to be communicated accurately to avoid these misunderstandings."
Just adding a response that I did on our Facebook group that I think is worth adding here. It was in response to a wish from someone that these articles are not useful and should not be printed until the conclusions are more well founded.
"Its a really complicated one this and even a will written Guardian article like this with he opportunity to comment will land differently depending on the audience. We have as you say may people running away with thoughts on the cures and help that this research will bring. Also those now making definitive statements that fibro is now an autoimmune condition as they always new it was.
Unfortunately, this is not going to happen any time soon and the research is not conclusive is making fibro am AI condition. You do not take someone's temperature a 100 times and only record the last one! Balance, caution and perspective are needed.
But, we want more research and these articles help promote research and discussion and awareness. So we would rather have them than not but we will try to educate people about where they stand within the discussion. We also have many within our community that believe there is no research, no treatments and not a caring soul within the medical and research institutions. This is also not the case and promoting research helps with that view. We will promote all research as the blind alleys that get blocked off by failed research help future researchers from travelling those paths. When research comes our way we will promote it even if it is not biological as we do not know which research will develop into options that will help people.
We really want more research and more papers published but everything needs context and patience and an appropriate level of cynicism :)"
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