New research on Fibromyalgia that sou... - Fibromyalgia Acti...

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New research on Fibromyalgia that sounds promising

Blu-cat11 profile image
36 Replies

Hi has anyone read this interesting new research from Liverpool University?

I would be interested to hear others thoughts and how ideas of how to approach my GP with this.

liverpool.ac.uk/research/re...

36 Replies
BlueTofu profile image
BlueTofu

Hello I have heard of this before, I got excited about it. However I understand there is no practical way of applying the curative technique to people. I saw some reference to the technique used, I can't remember where, unfortunately. It may be something to say to a disbelieving , GP. As in I saw this in (source), and it interesting... But unless there is a new medical study that needs volunteers, I can't see how it gets us any further. As it was only one study, and they don't know why the antibodies would act in that way . Which all makese sound like I'm squashing the idea, but I'm not, it just seems too far off to help us now, unless we can petition somewhere for further studies.

Blu-cat11 profile image
Blu-cat11 in reply to BlueTofu

Hi and thank you for your reply. Apparently there has been a study in Sweden, so maybe that will give weight to the evidence. I have contacted Liverpool University( there was an email address at the end of the study). They have told me they don’t have plans for further studies, but will put me forward if they do. At least the news made me feel better than I did yesterday!

desquinn profile image
desquinnPartner in reply to Blu-cat11

It was the same project that the Karolinska institute and KCL participated in with Andreas at Liverpool. Hopefully they can replicate and extend the research and see if it can move to practical applications, but it is quite a way away from a GP or ourselves benefiting from it.

Blu-cat11 profile image
Blu-cat11 in reply to desquinn

Thank you for your update. I can see now that it will take a while to come into practice.

BlueTofu profile image
BlueTofu

Hello in reference to previous reply, I have found something on healthline .com that's explains a treatment used sometimes in critical conditions, an infusion of plasma taking up to 3 hours (laying down), up to 5 sessions. It mentioned it being used in critical MS patients.

Blu-cat11 profile image
Blu-cat11 in reply to BlueTofu

My neice has Lupus and has an infusion called Rituximab. There are lots of different infusions apparently for various ailments. I may seek advice from a rheumatologist one day but at the moment il trying testosterone and don’t want to complicate things.

Alb2 profile image
Alb2 in reply to Blu-cat11

Unfortunately, some of the side effects caused by monoclonal antibodies such as Rituximab can outweigh the benefits for some people. You are right that there are different infusions for different ailments - most of these will have come about through cancer therapy research where other unexpected effects were noticed. Immune therapy is an incredibly complex and interesting field (I’ve attended many lectures over the years through my job) and research is going on all the time, but I think we are a very long way off from seeing it used for Fibromyalgia.

G1s2m3 profile image
G1s2m3 in reply to Blu-cat11

Hi 👋 have you read that testosterone helps ? I,ve read this for menopause symptoms. Has your gp prescribed it for you ? Dawn 😊

Blu-cat11 profile image
Blu-cat11 in reply to G1s2m3

Sorry not to respond sooner. I read a report that revealed that testosterone had helped fibromyalgia sufferers in a study. As my symptoms started when I had an early menopause I thought it might be worth a try. I have ended up going to a menopause specialist privately as I’m still waiting for an appointment at an NHS menopause clinic. My hope is that if it works I can then get it on the NHS. It can take 6-12 months to have an effect, so I’m still waiting to see any results. 😊

Michelleswshopping profile image
Michelleswshopping in reply to BlueTofu

I would do it .if I can feel better and live a better life I'm realy steuggl8ng with pain all over my body and burning . So anything is worth a go xx

BlueTofu profile image
BlueTofu

Versus arthritis charity has a list of funded fibro research

Blu-cat11 profile image
Blu-cat11 in reply to BlueTofu

Thank you I’ll have a look

JoseT profile image
JoseT

that page refers to an article from summer 2021. Not sure if there has been any progress since then.

Anyway this looks promising and perhaps one day government institutions will take more seriously this syndrome and more funds will be provided for scientific research. So far it is quite disappointing since we dont even know the root cause of this syndrome and there is not even a single medication which is purposely created to treat this illness (SP-104 for instance , a delayed burst release of LDN and developed by Scilex looks promising but is still in phase 2)

catherine19611 profile image
catherine19611

this article confirms what i have thought for the last 14 years, my mother was told she had MS, and for 42 years that is what she was treated for, she went into hospital for a blood transfusion for anemia, which she had every few years, they had to do something to the blood because of the antibodies before they gave it to her. whilst she was there the doctors said that as she hadnt seen a consultant in 20+ years they wanted to give her an mri and cat scan to see how the MS was affecting her, she had been paralised from the chest down since 1977.

the doctors came in to see her with the results, they said that there was no evidence to show that she had ever had MS. they also said that they didnt know what she did have or why she was paralised. about 6 months later there was an article in the paper about a woman who had been told she had ms for 20 years, she hadnt, she had antilipidsodle syndrome or hughes syndrome as it was also called, which is to do with antibodies in the blood. my mom was tested for this and this is also what she had.

the senior nurse at the gp practice hadnt heard about this, there were 2 practices in the same building and she asked all 11 gp's if they had heard about it, out of the 11 only 1 had, yet this has been known about since 1983 and this was 2007

never having heard about this i researched it, it said that their research found that 1 in 3 patients who were diagnosed with ms actually had this and not ms. it also said that people who had this very often had a close relative who had fibromyalgia which i was diagnosed with in 2004. so there has to be a connection with antibodies in the blood

i also asked my gp if i should have the covid vaccine as one of the symptoms of long covid is chronic fatigue, which i also have, he said i should be fine, i wasnt, my chronic fatigue is now that bad that i can only do about 20 minutes a day of normal daily activity before i have to sit or more often than not lie down for the rest of the day, if really bad it can be several days of 'resting' unable to do anything

G1s2m3 profile image
G1s2m3 in reply to catherine19611

Sorry to hear your mum going through this 😢 did you mean your symptoms worse after having covid or since having vaccine ? I feel my symptoms worse after vaccine. Dawn 😊

catherine19611 profile image
catherine19611 in reply to G1s2m3

my mom died in 2008. I havent had covid, it was the vaccine that did this to me

Kindness22 profile image
Kindness22

Hello, thanks for the news! That' s very interesting. Also, new findings give some hope..

Confused01 profile image
Confused01

It’s so frustrating when research is undertaken with conclusive results yet nothing further is done about it. What’s the point if not acted in to help patients?

desquinn profile image
desquinnPartner in reply to Confused01

It is not really conclusive until it is replicated in other sites with non connected bodies and in larger trials. I have seen so many "conclusive" results with claims that then faded when replicated. XMRV would be just one example that consumed so much time and bandwidth in times past.

Woodhouse16 profile image
Woodhouse16

Hi i saw a video study on youtube of an american professional who had studied various things in fibromyalgia sufferers and said it is a disfunction with the mitochondria which are the power houses in our cells of our body. Unfortunately this was afew years ago i saw the video and cannot now remember who he was ect but he was in america and too said some sort of infusion was the way forward. I suppose thinking about it if what he says is right about our cells all over our bodies being disfuntional woulx account for the fatigue brain fog pain sensitivities ect as he said the disfuntion is our cells cannot process nutrients for bodies to function properly.

desquinn profile image
desquinnPartner in reply to Woodhouse16

Mitochondria dysfunction and ATP production have been cited several times, but it has not really went anywhere and not a main research area at present to my knowledge.

Woodhouse16 profile image
Woodhouse16 in reply to desquinn

It should be in my opinion

desquinn profile image
desquinnPartner in reply to Woodhouse16

If the research is strong enough, then it will go somewhere but if it is not then it will not.

Joan161 profile image
Joan161

Hi this is so interesting. I was only diagnosed last month but have had severe symptoms since 2020 after having had breast cancer. Consultant believes the trauma of that so young triggered it. My Mother has had fibromyalgia for years since her 30s.

I had seen something like this before about antibodies and also about mitochondria dysfunction too as a cause. Also I’ve looked into functional medicine which looks to root causes of diseases etc. Seen some say mold toxicity. Like if you have mold in your home, like bathroom etc tiniest amounts can affect some people. Some people react badly to it and can’t detox mold from their bodies and get symptoms similar to fibromyalgia. So they have said that as a root cause.

Another root cause I’ve seen is leaky gut syndrome which obviously would affect your immune system as they now know immune system is in our gut. I’ve always had trouble with my gut and IBS since my teenage years. Also later developed lactose intolerance so maybe something there in that about leaky gut. Another suggestion I’ve seen is gluten sensitivity. I’d love to try gluten free but it would be hard lol. I enjoy pasta a lot lol.

I try take probiotics, natural yogurts, kefir yoghurts to try help my gut health. Also coq10 is meant to be good for mitochondria dysfunction to help energy get in to cells from food. Sorry for the rambles 😊

Sparklingsunshine profile image
Sparklingsunshine in reply to Joan161

I'm a member of the thyroid forum on Healthunlocked and a lot of our members with autoimmune thyroid issues have reported success when going gluten free. Leaky gut seems to be a common issue for them as well.

Woodhouse16 profile image
Woodhouse16 in reply to Sparklingsunshine

My pain factor of fibromyalgia has reduced dramatically going gluten free.. still in pain daily but manageable now and not as unbearable as it used to be.

Joan161 profile image
Joan161 in reply to Woodhouse16

wow woodhouse that’s amazing. Makes me feel excited that there’s some hope to reduce pain levels by going gluten free. Thanks so much for your reply.

Woodhouse16 profile image
Woodhouse16 in reply to Joan161

Hi joan yes i'm not saying its an instant fix it does take time and patience plus everyones different but over time it has reduced my pain especially quite abit. It was trial and error with me as i too have suffered irritable bowel from childhood and gastro problems i also have a abdominal hernia that needs repair but as my help moving forward after a diagnosis came just about the same time as first lockdown i was sort of left in limbo so found myself looking into various articles ect which led me onto trying gluten free. After 2 years i still have majority of things gluten free lactose free and dairy free but do allow myself the odd treat a couple of times a week. I send you all my best wishes and hope you can begin to see some results if you attempt to try this out.

Joan161 profile image
Joan161 in reply to Sparklingsunshine

Oh that’s really brilliant news sparklingsunshine. Thanks so much for replying and telling me that. I have been wanting to try it for ages. I really must look for alternatives and swap to gluten free. The pain relief I take at the moment helps sort of with some of my IBS symptoms. But I definitely know I have bad gut health which I’d say then would mean I have leaky gut. Bone broth and taking collagen powder is meant to be helpful for leaky gut to repair the gut lining. Which I’ve only started taking. So here’s hoping these things might help 😊. Thanks again

Sparklingsunshine profile image
Sparklingsunshine in reply to Joan161

Interestingly the thyroid members have reported their antibodies decreased significantly whilst being gluten free. It doesnt work for everyone but could be worth a try.

Sparklingsunshine profile image
Sparklingsunshine in reply to Joan161

I used to get terrible IBS, but found going low carb and cuting out bread, pasta, rice etc helped a lot.

Blu-cat11 profile image
Blu-cat11

Hi All thank you for all your responses. It’s good to have generated this discussion. I understand the frustration that as yet there is no cure for fibromyalgia. I appreciate the support of this forum, it’s positive to share ideas and if one person can find a direction then that is excellent news. Good luck Joan161 with your gluten free trial. Keep finding things that make you smile everyone 😊

Whiteclouds profile image
Whiteclouds

hi Blu-cat11. I’ve read this and other articles about research ongoing into fybromyalgia at the karolinska institute , it sounds promising and hopeful that research is being carried out and that there will be help for people like us who suffer so much with the condition. I have always suspected the condition was to do with immunity as I have always had a low immunity ever since childhood always caught everything going was a sickly child and missed a lot of schooling through illness. I have had my suspicion that this is an autoimmune disesease, I hope that the research will find a cure for us all soon, so that we can live our life without the agony of constant pain.

Blu-cat11 profile image
Blu-cat11

I’m sorry to hear that you have fibromyalgia too. It may be tiny steps but hopefully a cure will soon be found.

Sarahvit profile image
Sarahvit

I have heard about the autoimmune system possibly playing a rule in causing the symptoms of fibromyalgia a while back but haven’t heard any outcomes of treating and curing fibromyalgia. This research needs to be but into action to cure fibromyalgia. We have suffered enough I personally 31yrs, others longer and some not as long. This needs to be pushed forward in medicine and put into practice.

Crosspigs profile image
Crosspigs

We all know we have to be realistic, and any cure will be a way off unless more resource is ploughed into it, BUT any positive, is a positive. If they get one step closure, then that is a good thing. To try and imagine getting my old life back, is quite daunting. However the road infront of me is just as scary & overwhelming.

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