I just got a link for this New Scientist article from ib003 on the fibromyalgia forum (where it had been admin deleted - a shame). It talks about a drug that is being trialled that showed an accidental result of curing CFS (chronic fatigue syndrome) by wiping out antibodies. I had no idea they could even do this, in any way, for anything. The big question is though, if they can do this for CFS, could they do it for other autoimmune issues, where the antibodies are out of control?
I know there are obvious pitfalls to this, as antibodies are there for a reason, but think of all the autoimmune problems around. Would this drug work on them? (I haven't read this thoroughly yet, I was too excited to share. So forgive me if it's blatantly obvious it couldn't.)Could it be adapted to other conditions? Or is this a scary Frankendrug that's going to do more harm than good? Real food for thought....
ETA: I did edit this earlier to add in that I had reread it and saw that it's a cancer drug, so not a light and easy choice, but it seems to have lost my edit! This treatment will also obviously be limited as to what B cells it kills. Not all B cells, I imagine, produce all antibodies, so there's a problem right there, but it does seem like a very promising avenue of research. It seems likely that if they can target one form of antibody they can target another. The real problem will be in the knock-on effects of doing it....
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Chancery
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Hah! That's going to be a problem right there, H. As things like Hashimoto's are not 'life-threatening' there's no way the NHS would be paying for that. And in the US it would be an insurance issue, I imagine. But still, research is promising, and drugs do get cheaper if it is in the interests of the drug companies to produce a lot of them, and God knows there are enough Hashimoto's sufferers to make it worth their while....
Wishful thinking Chancery unless it makes world headline news tomorrow.
Whether it be a cure for Hashimotos, Multiple Sclorcosis, Rheumatoid Arthritis or Type 1 Diabetes I don't believe there is a cure for all until I have experience it.
The link below states there are 80 auto immune diseases but I though there was more.
I don't think it would have to make the news, Flower. What it would have to do is show that it could be used for something like Hashimoto's. Then drug companies would throw money at it like water. It stands to reason that if they thought they could turn out a drug course that would even put sufferers into remission for sizeable lengths of time, they'd do it. Especially if it was only remission, because that would be a cash cow of extraordinary magnitude!
No, you are right Chancery.
It wouldn't have to make the news but would only work if it were the same companies who made Levothyroxine so one cash cow just replaced another.
True, there would be a conflict of interest there, Flower. My guess is whichever drug could be milked for the most money over the longest time would win. So if they thought they couldn't sell enough of the cancer drug because it was TOO effective, they'd probably bury the research that said it worked. Not the first time they've done this, sadly. Likewise if they could make more long-term dosh out it than Levothyroxine, they'd quickly publish all these studies showing how old-hat, and no doubt dangerous and ineffective, Levothyroxine was, while pushing the new drug as a wonder-cure.
Thanks for posting this Chancery, you beat me to it as I was going to post it here for us Hashi types too.. I suspect the same rules apply on this forum so this will be deleted overnight too.
The sad thing about the cash strapped NHS is that they are always looking for ways to save money, but don't take the wider view that treating chronic conditions like CFS, Hashimotos etc, would actually free up a lot of GP time and reduce referrals to secondary care, which would again save money and resources in the longer term. The fault in the system is a lack of clinical trials and NICE guidance on care pathways so I sadly I doubt we'll see any change in th short term.
I am sure that more research on autoimmune disorders would find some links as many of us have more than one autoimmune disorder and they have overlapping symptoms. I remember the fight that some patients had to get Rituximab on the NHS in my PCT and can't see us getting help. It's all so frustrating.
Just to add to what Clutter says here, the fibro forum has a strict rule that they don't allow people to post any link which contains adverts. In this day and age - with most websites using ads to help cover costs - that means that just about any link you post on that forum will be deleted - even a top-notch one like this one from the New Scientist!
Personally, I think that renders that forum quite useless for anyone who's looking for useful info like that. Thankfully, they don't do that here at the T-UK forum and helpful links like that are welcomed.
My thoughts entirely, Caroline. It seems odd in the modern advertising-on-your-shoes world to just ban it across the board, thus losing anything of value - baby and the bathwater comes to mind. If they even allowed it only from certain named reputable sources, that would be an improvement. Seems a shame for the sufferers looking for good research though....
Sorry, Ib, hope I didn't tread on your toes there; I just thought it was too good to keep to ourselves, and I knew the thyroid forum has a more realistic approach to advertising within links: as long as you are not brazenly selling something and it's a worthwhile piece of research, they want you to share it.
You are absolutely right about the NHS always looking at things with too narrow a vision. They do the same with illness diagnostics. They never look at the big picture and instead want to treat one symptom with one drug. That's how you get these awful situations of people on fifteen drugs and just getting sicker and sicker. I find this incomprehensible. If you just found out what was ACTUALLY wrong and treated that, there would be at least fourteen drug bills saved, not to mention endless doctor visits and the inevitable hospital treatment when people get so ill they need more intensive care.
I am not sure if it's a fault in Western medicine, as an ideology, or it's a fault in NHS administration, with the ludicrous ten minute appointments and doctors being encouraged to process patients like meat. Perhaps it's a combination of both.
And I couldn't agree more on the possibilities of autoimmune research having overlap. In fact, I think that what I was just saying could come into play here - if the NHS bothered to see the big picture in people's conditions it would surely help research too. If big picture thinking was driving their ideology then the research would follow suit. It's a gift to save money in the long run, but it's an old institution under financial attack from all corners of government and that doesn't help.
But you've actually personally had experience of Rituximab on the NHS "in my PCT"? I'm sorry, I don't know what that is. What was the problem - was it the expense, as Helvella pointed out?
Hi Chancery. I personally haven't had experience with Rituximab, which is the cancer drug that has wiped out the antibodies in the CFS patients. I do know rug that drug use is can be restricted even with those who qualified for it under national NHS guidlines. Each PCT can make a decision on what drugs they will fund and this will be detailed on their local Formulary.
Don't worry, no toes were trodden on. Information has to be shared by us all without any egos getting in the way, if we are ever to get any results
You drove me to look that up, ib - primary care trust, that right? I am sadly ill-informed on how the NHS works. I am completely selfish and just worry about the good old patient-doctor interface!
I SHOULD pay attention to how it works, it would undoubtedly be in my best interests, and I'd look less ignorant, but I have a horrible feeling it would just infuriate me. I don't need any more stressors!
Chancery, I was reading something on autoimmunity yesterday. Diabetes Mellitus and autoimmune thyroid diseases are asymptomatic until damage is caused and then symptoms are treated. The article was complicated but the gist was that there is research into treating or altering the genes affected, or which may become affected, before damage is caused but it is slow because of the potential and actual knock-on effects on other genes and pathways.
Oh, I'd love a link to that, Clutter, if you can remember where you saw it. On one hand that's such an exciting idea, treating it at genetic level, saving people the misery of a slow deterioration, but at another you think, 'Dear God, what if that's doing something really awful but we won't know until some later gene expression shows itself.'
I can't imagine what doing genetic research must be like. So very, very sloooooooww...
Bit like macaque monkeys. What's with all the macaque monkeys? Admittedly I never read research papers until after I became sick, but they use a serious amount of those poor little monkeys for medical research. I don't know whether it's because they resemble us more in some obscure way than other primates; are small and therefore cheaper to house and feed, or there is just a thriving (insert third world country of choice) black market in macaque supply.
I doubt this drug will be used for a long term treatment of CFS. This is because this drug along with many cancer treatment drugs can damage your heart. Also knocking your autoimmune system out like that leaves you at serious risk o infection. However I think medical research will be really interested in this as it gives them a chance to investigate the effects on CFS and maybe they will come up with a treatment for CFS in the future that doesn't carry the high risks this drug does.
Oh yes, absolutely, Wavey. As soon as I saw it was a cancer drug my heart dropped a little. It's no joke taking that therapy when you have cancer, never mind for something non-life-threatening. In terms of being free of drug-related illness, that one is almost a non-starter. People with cancer refuse cancer treatment just because of quality of life considerations, so yes, that's a big obstacle. But just the act of discovering that removing antibodies relieved the symptoms of CFS is a discovery in itself. It tells them a very valuable thing about the mechanism of the condition, and it definitely underlines it's not in sufferer's imaginations!
I think that even as a springboard for research, it's very exciting.
I'm not entirely sure what you're thinking of, RFU, as regards what would be easier. Certainly if it's a known trigger then yes, it's relatively easy (coeliac being a case in point), but one of the troubles is that in most autoimmune conditions no-one has the first clue what is causing them and that's what makes it so difficult to treat. It's one of the things I find infuriating about doctors, both medical and alternative, writing about things like Hashimoto's; they list at least twenty things, maybe thirty, which includes everything from your cooking pots to your drinking water to your breakfast, that is a possible 'endocrine disruptor' and you're supposed to take what from that?
All I take is that it's an insurmountable task, a bit like pinning the tail on the donkey, and that actually, as usual, none of them really know the causes so they are just hedging their bets by throwing in everything.
I see a LOT of dedicated people on these forums who literally try everything; their whole lives are taken up with avoidance of more and more things, but I notice they are still sick, in one way or another.
Drug companies do suppress research, yes, but even they can't hide basic facts, and the fact is most autoimmune conditions remain incurable simply because we can't stop the autoimmune reactions occurring.
I don't think they could keep lots of cures secret, RFU. If nothing else, humans would blab. We're not good at keeping things secret! No matter how suppressed a thing is, there is always someone who knows and word tends to spread, albeit under the surface, until it becomes what we call 'an open secret'. That's not really what suppressed research tends to be. It's actually more likely to be negative or unsupportive material that's suppressed, rather than the good stuff.
For example, if they do a study that inadvertently shows statins don't really help people who've already had a heart attack, that's the kind of thing they keep quiet. The simple reason being it might impact negatively on their sales. The reason they can successfully keep it quiet is because most people haven't got access to the information in a study to make the analysis themselves, and it isn't something that would normally stand out unless you did a study.
However, if you discover that chestnut tree bark cured gout that would be a lot harder to suppress, simply because there will be other people researching it, and the effect has probably been suspected by others in the past. It's little things they can suppress, like nobbling figures, or keeping negative trials from prying eyes. Major finds are a lot harder to keep quiet. They usually suppress those by sneering and ridicule and attacking reputations - Dr Atkins being a case in point. Or Dr John Yudkin. These were men who had made important discoveries about carbohydrate and they 'suppressed' that info by making them look like quacks and idiots.
Anyway, we could be talking about this till the cows come home. Let's just feel cheered that some good research got out there! X
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ME/CFS discussed in terms of thyroid dysfunction
A New Thyroid Subset For Chronic Fatigue Syndrome (ME/CFS)? The Low T3 Syndrome Group by Cort Johnson www.prohealth.com
Well, I had my first appointment with the endo today.... and the conclusion he came to was...... (wait for it)
Hypo and chronic fatigue
