Home General Info & Awareness Health In The News [ 01/06/2022 ]

Health In The News [ 01/06/2022 ]

by InvisiblyMe

Here’s a look at a few health in the news stories recently you may have missed. There are also some positives in the middle of the murkiness we typically see reported.

★ ★ ★

Apaluptamide Approved For Prostate Cancer

The UK’s NHS agency NICE (the National Institute for Health and Care Excellence) is not always NICE. The media often covers stories of medications being turned down for NHS use in the UK and inappropriate or unpopular guidelines. One of those stories is below, relating to a petition to have NICE re-evaluate their guidelines for chronic pain treatment. However, there are the odd positives amongst these stories that can be missed. One is the green light for a new treatment for prostate cancer.

Apalutamide (brand name Erleada) is the “second novel hormone therapy” and one for men with advanced prostate cancer who are not suitable for or responsive to chemotherapy or other hormone treatments. NICE suggest around 8,000 men in the UK could benefit from this drug being made permanently available to patients on the NHS after years of appraisals.

Until now, the choice of treatments has been very limited, with previous options like chemo not always tolerable, let alone successful. While not a cure, Apalutamide has been shown able to help control the condition or perhaps even extend the anticipated lifespan of patients taking it, giving them more time to spend with their families and live their lives with the condition better managed.

You can read more about Apalutamide and prostate cancer here.

Petition For NICE To Review Their Cruel Chronic Pain Guidelines

The so-called “opioid epidemic” has swept up parts of the world like the UK and US, and frustratingly the media attention and assumptions being made are having a severely detrimental impact in healthcare and on chronic pain patients.

Media and medical bodies are often confusing chronic pain patients appropriately taking prescription opioids, with individuals without pain addicted to opioids and often adding them alongside illegal drugs like heroin. The “opioid crisis” then refers to all individuals on opioids as though they’re in the same bracket, which they are not. It increases stigma, misunderstanding and ignorance, both in wider society and within healthcare. The potential knock-on problems could be anywhere between bad and fatal. I’ve written previously about why the so-called opioid crisis is dangerous for those with chronic pain.

In an effort to improve their image by reducing their figures for opioid prescriptions, healthcare services are drawing up inadequate alternative treatment options while healthcare workers take it upon themselves to reduce or remove prescriptions from patients.

In the UK, NICE revised their chronic pain guidelines in 2021. I wrote to them with my thoughts during their phase of debating the guidelines. It seems I, and all other chronic pain patients who had given their input, was ignored.

NICE are focusing on alternative therapies such as CBD and acupuncture for chronic pain, particularly where there’s no textbook root cause of the pain, such as when considering a condition like fibromyalgia. Even with other pain conditions, for instance arising from nerve damage, it’s likely the focus will be away from prescription pharmaceuticals.

This is all very well if the patient needs are taken into consideration. Sadly, it appears that’s not often the case. For many individuals with chronic pain, opioids are a last ditch option to keep them just about functional enough to get the basics done each day. There’s a reliance on the medication because it’s needed, not because there’s an addiction or a psychological attachment to it. Without that medication, pain can be intolerable, unbearable and incredibly debilitating.

For many with chronic pain, myself included, opioids are a literal life-saver. Taking this away wouldn’t just be cruel, it would be knowingly damaging and potentially life-threatening. This is the problem when big decisions are made by people who don’t have a clue what they’re dealing with and won’t be hurt by the fallout of their actions.

There’s a more recent petition that is desperately in need of thousands more signatures to ask for the NICE guidelines to be reviewed. 10,000 are required by September 2022 if there’s any chance for it to be considered. If you agree with this, you could make a difference with just your signature, so it would be greatly appreciated if you could sign and share.

Please take a look at the chronic pain petition to sign and share here.

A quote by Invisibly Me in white text against a dark background of grass and peach-coloured flowers. It reads: You know your body and your pain better than anyone. Never doubt your experience or stop trying to be heard. Your health is worth fighting for.

Long Term Paracetamol Use Linked To Cardiovascular Risk

Paracetamol (acetaminophen  in the US) has often been touted as a safe, all-rounder when it comes to colds, pain, illness, headaches and fever. Individuals may use it short or long term, but there are people, myself included, who find it does nothing for them. Many studies have been positive on its use and few have looked at the potential dangers of longer term use.

A more recent long-term study, albeit a small one of 110 participants, has concluded daily paracetamol can increase the risk of heart attack and stroke by 20%. Regular paracetamol use over time in this study has been defined as 4mg of Paracetamol every day (which could mean 8 standard tablets depending on the strength).

The participants were those with high blood pressure, and after just a couple of weeks on paracetamol 4 times a day, or 4mg in total, blood pressure had increased compared to a placebo group. Hypertension (high BP) can lead to serious illness and complications, including heart attack and stroke.

The researchers note the findings suggest more discussion should be had between doctors and their patients who take paracetamol regularly over an extended period of time, with more caution for those at risk of cardiovascular issues by weighing up any potential benefits versus risks.

You can read more about the study and implications here.

Multiple Sclerosis Treatment Breakthroughs

Immune cell implants may have shown promise as a potential treatment for Multiple Sclerosis (MS) in the future, with results showing slowing or even reversal of the condition.

24 individuals with MS were implanted with t-cells targeting the Epstein-Barr virus (EBV) that causes glandular fever (also referred to as ‘mono’). Those immune cells (referred to as ATA188) were taken from patients who had successfully overcome the virus and were given to the MS patients via injection.

20 out of the 24 MS patients reported a benefit after a year in terms of improvement or stability of their condition. 18 of the participants were followed up for around 3 years after treatment to monitor any changes, with “sustained disability improvement” found. After 3 years, 9 participants were found to have improvement visibly confirmed on their brain scans, which could suggest a potential for reversal of the condition with such a treatment and a link to EBV as a causal factor in MS. Nonetheless, it was a small study and full details on doses given or the mechanics of improvement were not specified or fully understood.

In other MS news, a new drug diroximel fumarate – known by the brand name Vumerity – has been given the go-ahead for use in the UK. This is a pill taken twice a day for those with relapsing remitting multiple sclerosis, believed to be a more stomach-friendly alternative that works as well as similar disease-modifying therapies. It contains the same active ingredient as the treatment Tecfidera does, but the different chemical structure appears to be better tolerated by patients.

The UK Medicines and Healthcare Products Regulatory Agency approved Vumerity in 2019, and NICE green-lighted it for use in April 2022. This means the treatment should now be available for patients on the NHS in England and Wales. It’s hoped that a decision for N.Ireland should follow shortly.

You can find out more about this latest MS treatment here.

Instant Insulin & An End To Diabetes Fingerprick Testing?

A “blisteringly brilliant” trial of a new high tech device could pave the way for a new method Type 1 Diabetes management.

A device is implanted under the skin with sensors to constantly measure glucose levels, doing away with the need to do routine fingerprick testing. If required, the device will then instantly administer a dose of insulin to the bloodstream, mimicking the job of the human pancreas. Not only could this do away with the need to undertake routine fingerprick testing, it could help prevent potentially life-threatening hypoglycaemic attacks by constant monitoring and not allowing sugar levels to drop too low.

You can read more about the ‘artificial pancreas’ development here.

Calcium Supplements Linked To Heart Damage

Calcium is important for all humans for strong, healthy teeth and bones, as well for muscles to move and nerves to send messages throughout the body. Supplementation is often sought by individuals or prescribed by doctors if a deficiency is found, and the NHS also recommends vitamin D and calcium together if the patient’s diet “isn’t as good as it should be”. It’s also used by many individuals with thin bones and at great risks of breaks and fractures. Some of these will be older adults, but even individuals under 40 can have osteopenia and osteoporosis, myself included before I was even 28 years old.

Taking calcium is typically seen as safe, but excess calcium in the body is known to be potentially dangerous, putting more strain on the kidneys to filter it. New research has indicated suggested calcium could have negative ramifications for heart health.

Previous research has noted some curious concerns with high levels of calcium but it hasn’t been robust or overly enlightening. In 2019, Massachusetts’ Tufts University look at the medical records of 27,000 adults in the US and discovered a link between higher doses of calcium and cancer. In 2010, a review in the BMJ (British Medical Journal) discovered significantly higher rates of heart attack in individuals using calcium, though the causal factors weren’t investigated.

In recent research, Ohio’s Cleveland Clinic Foundation followed 2,650 patients over a 5 year period. All individuals suffered with aortic stenosis, a condition that’s thought to affect 40,000 people in the UK, whereby the heart’s aortic valve doesn’t open adequately. This consequently reduces the flow of much-needed oxygen-rich blood around the body.

Within this pool of patients with aortic stenosis, those taking calcium (with or without Vitamin D) were found to be at twice the risk of fatal heart problems, compared to those who didn’t take calcium supplements. Not only did calcium supplementation double the chance of dying from heart problems, it put them at a 48% higher risk of requiring valve replacement surgery and 31% higher risk of dying from any cause.

Findings should be taken with caution as the study was relatively small without the controls required to definitively state a causal relationship or to what degree. It does suggest that the benefits of calcium should be more thoroughly evaluated as those with underlying heart problems face greater risks with supplementation. Future research is likely to focus on this issue further, along with evaluating the risks of calcium supplements available OTC generally.

At present, there’s uncertainty as to how beneficial calcium supplementation really is for those with osteoporosis. With supplements often containing high doses of this mineral, please speak to your doctor before supplementing or if you’re currently on supplements and have any concerns.

You can read more about this research into calcium and heart problems here.

A black scroll divider.

Caz  ♥

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Ashley June 1, 2022 - 5:29 pm

This is some great information. It’s so ridiculous that NICE is trying to make things harder for chronic pain patients. I can see recommending being more careful with opioids for acute issues to reduce the risk of dependency, but expecting people to just be in pain forever and put up with it is cruel. I’ll share the petition link on my next weekend wrap-up post.

InvisiblyMe June 3, 2022 - 4:55 pm

I was in the GP waiting room last year and an elderly gentleman was there talking to a receptionist about his meds. I caught the woman saying (it’s a small room and she was loud) that he gets over 100 Tramadol opioid capsules each month and has done for years, and does he still need those? He said, and I kid you not, “I don’t know why I’m given those. I don’t have any pain”. THAT is the sort of thing that needs weeding out because I didn’t think it could happen. Clearly it does. It’s very different for those in pain on a chronic, ongoing basis that need prescription painkillers as a last-ditch option to get them just about functional. There’s isn’t anything else that comes close; no amount of mindfulness or CBT will do the same.

Thanks for offering to share the petition, Ashley. I really do hope it gets enough signatures to be discussed because I fear NICE, our gov and the NHS simply don’t care. xx

c.a. June 1, 2022 - 5:50 pm

I had to laugh when I read the acronym, NICE!! ????
This was used by C.S. Lewis in That Hideous Strength, for the National Institute of Co-ordinated Experiments, a think tank using demons to gain control of the entire earth! Wonder if anyone at your National Institute for Health and Care Excellence ever read one of Britain’s most famous authors!?
And the people at Lewis’ NICE were not nice, either.
❤️&????, c.a.

InvisiblyMe June 3, 2022 - 4:57 pm

It’s a weird irony when you know that NICE is anything but ‘nice’!
I had no idea about That Hideous Strength but now you’ve told me, it’s all starting to make sense now… ???? x

Blanca June 1, 2022 - 7:36 pm

Very informative post Caz! I knew about the long term paracetamol use and cardiovascular risk, I actually read several articles about it. The multiple sclerosis news are very hopeful. Thank you so much for sharing!

InvisiblyMe June 3, 2022 - 5:01 pm

I think the potential for paracetamol not be the completely “safe” wonder drug it was made out to be is now becoming increasingly apparent. I’m going to do a post looking at the research on this and sadly I can’t say I’m surprised. It often happens when a drug is thought to be safe, it’s pushed on people in droves, and only years or decades later they look at it again and realise it may not be that safe after all. Thanks for reading & the comment lovely! xx

Rachel Duerden June 1, 2022 - 7:51 pm

Petition signed. I’m shocked at the lack of compassion.

InvisiblyMe June 3, 2022 - 5:12 pm

It’s crazy, isn’t it? It’s amazing we live in the day and age to have these prescription painkillers, it’s sick to take them away from those that need them to live and just about function on a day to day basis. Thank you so much for signing, Rachel ????

Sandee June 1, 2022 - 7:51 pm

It’s all about the bottom line and that’s a shame. We need what we need when we need it. It should be up to the doctor and the patient as it used to be.

Have a fabulous day, Caz.

InvisiblyMe June 4, 2022 - 4:39 pm

You’re right, Sandee, the money factor shouldn’t be what gets in the way when it comes to something like this ???? The rest I think is down to ‘virtue signalling’, as in trying to make it sound like they’re doing a wonderful thing by tackling the so-called opioid crisis by taking patients off opioids, conveniently ignoring that they need them and that they’ve totally missed the point of the whole crisis!
Have a lovely weekend both of you! ???? xx

The Oceanside Animals June 2, 2022 - 3:47 am

Lulu: “Interesting news! Our Dada takes calcium citrate to help ward off kidney stones. We sure hope it’s not hurting his heart any! But I’m pretty sure that after four kidney stones before he started taking it and none since, he’s not going to stop …”

InvisiblyMe June 4, 2022 - 4:44 pm

I think your Dada has to weigh up another kidney stone with the small possibility of related heart issues, and I think he’s made the right call. Kidney stones definitely weigh more!

Carolyn Page June 2, 2022 - 7:16 am

The petition, Caz, is only for UK residents – otherwise I’d be more than happy to sign! And yes, those making these critical decisions are generally those without personal experience and involvement. Shame!
The new diabetes ‘artificial pancreas’ treatment sounds fabulous.
Medicine continues to find good outcomes for many. I know, though, that for some it is far too little.
Sending hugs… xoxoxo

InvisiblyMe June 4, 2022 - 11:37 pm

Thank you very much for your desire to actually sign it, Carolyn, that means a lot ???? I really does anger me no end that the voices of those living with something don’t get a say, while those with not a clue get to make the rules, forever changing the lives of the patients with no consideration or concern for the damage being done.
I agree with you on how modern advancements are continuing to bring good outcomes to many. Sadly there’s a long way to go but it certainly gives us hope, and that’s a wonderful thing. Years ago, I image a huge amount of what is taken for granted today wouldn’t have been dreamed about. The same will be said in 50 yrs time, or even 20!
???? xx

Ellie Thompson June 2, 2022 - 11:33 am

There’s some very interesting reading here, Caz, and thank you for sharing all this. It must have taken a while for you to put it all together. It’s appreciated. The diabetes improvements sound good. I have to take calcium every day and have had to do so for decades because I have severe osteoporosis. I am concerned about the risk of heart problems, though. I will talk to my doctor more about this now that I’ve read your article and the link. As for opioids, I fractured my pelvis in six places a couple of years ago, and my doctor kept me on morphine for nearly a year as the pain was just unbearable. I realise now that that wasn’t such a good idea, but I think my GP didn’t know what else to do with that level of pain. When I finally saw an orthopaedic specialist, he was horrified by how long I’d been on it and wanted to take me off it immediately. I would have gone into instant withdrawal had I done this. Luckily, my doctor started reducing my morphine by a small amount every two weeks, and I finally got off it but had to replace it with Co-Codamol (not ideal, I know). I’m shocked about the risks of paracetamol too. I have signed the petition (I’m in the UK) more than willingly. Thanks again for such an eye-opening post. Take good care of yourself. Ellie xx ????

InvisiblyMe June 6, 2022 - 4:07 pm

I’m glad you like the post, Ellie! I’m sorry you have such severe osteoporosis. I also have osteoporosis (diagnosed osteopenia age 28 ish). I think it’s a good idea to broach the new research with your doc just to check things out. The research definitely needs bulking up and better controls to see if and how much risk there really is, so I don’t mean to post this to panic anyone. I just think it’s important to know because we often find this with meds or supplements that have for years been considered safe and suitable for daily consumption, that then, decades later, find they may not be quite as safe as they were sold as being.

I’m glad your doc had the sense not to cut you off morphine suddenly because that could have been awful after a year on it. Was it Oramorph you were taking? I know people who’ve had that for a few years but I imagine a smaller dose than you were on. I personally – and I’m not a doc so best ignore me maybe – don’t think taking Co-Codamol regularly is a ‘bad’ thing if you’re living with chronic pain. You fractured your pelvis in multiple places for crying out loud, I can’t imagine what that would have been like ❤️ I don’t know what you pain level is like now, but I do hope Co-Codamol does a little something for you. There’s not much for chronic pain that’s strong enough but safe enough for long term use so we’ll always be between a rock and a hard place I think.

Thank you so much for signing the petition! I’m hoping NICE, the government and the NHS will listen to us all because so far they’ve just ignored those with chronic pain altogether.
Thanks for a wonderful comment, Ellie ???????? xx

Ann Coleman June 2, 2022 - 2:43 pm

We have the same problem here in the States: now the medical community is trying to cut back on all opioids, even those needed for people in severe pain. It needs to change! I hope you get the signatures you need to make the National Health listen, and that things change here too.

InvisiblyMe June 6, 2022 - 4:17 pm

It’s awful, isn’t it? I think the ‘Opioid crisis’ hysteria following Oxy swept governments and healthcare services along in the frenzy and nobody stopped to think about chronic pain patients, or who the ‘crisis’ actually applies to. Altogether, our voices our louder. If we persevere, maybe we can wear them down and finally someone will listen to us. They have to. The alternative doesn’t bear thinking about. x

Despite Pain June 2, 2022 - 3:20 pm

There is some fantastic news in this post Caz concerning advances in treating prostate cancer, MS and diabetes. But the NICE guidelines are so concerning, aren’t they? I just published another post about it this morning. Nobody is listening to patients and nobody seems to care about how we’ll be affected.

InvisiblyMe June 6, 2022 - 4:29 pm

I like to think the positives and the signs of hope can outweigh the negative news, but it’s hard to see the good stuff a lot of the time these days. The NICE guidelines are beyond infuriating. I’ve got a new post solely on the guidelines partly drafted and I saw you posting about it too which is fantastic. They refused to listen before drawing up the guidelines, despite claiming to want to hear from patients. But surely they must listen to us eventually because our voice is louder when we all come together like we are, fuelled by outrage and anger. They can’t railroad all of us if we keep fighting for the right thing. x

Ellie Thompson June 3, 2022 - 12:08 pm

Hi Caz. I just wanted to let you know that I left you a long comment on this post yesterday, but I think it must have gone into your spam or got lost in the ether somewhere! Unfortunately, I didn’t keep a copy of it and can’t remember what I typed now. I didn’t want you to think I hadn’t bothered to read your post or comment as it was particularly interesting and relevant to me. I’m very sorry about that. P.S. I left my email address and website details as you requested at the bottom of my comment. All very mysterious. Love Ellie xx ❤❣❤

InvisiblyMe June 6, 2022 - 4:56 pm

Aww I’m sorry, Ellie – thank you so much for letting me know and taking the time to write again! Your comment hit the spam folder, which is weird as it’s not the first time you’ve commented on my blog. Hmmm, Akismet is such a meanie sometimes. If it happens again, where your comment seems to disappear into the ether, don’t worry about it and just assume it’s in spam (I’ll make sure to check and fish it out because your comments are too precious to ever miss!) Thanks again lovely ???? xx

Sarah June 7, 2022 - 8:49 pm

Thanks for these updates, really interesting. I’ve signed the chronic pain petition, sounds like another attempt of the NHS trying to make the stats look better without understanding the issues involved. I’m lucky not to suffer from pain but have seen how debilitating it can be for friends. Thanks for raising awareness.

da-AL July 4, 2022 - 1:02 am

your info always comes from such a clear desire to help us — thank you <3


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