"That Buzzing That Never Goes Away" — Article in The Times

I read the whole study and quoted the main conclusions.

I asked what the actual evidence was that Mindfulness has on cancer outcomes. You are supposed to be the expert but so far you haven't delivered any evidence. Still waiting for it ...

 

I did a very brief scan to see if I could find that exact example, but this popped up first. I’ll post an excerpt below:

Then the “miracle” started. Despite receiving no treatment at all, the tumours were shrinking and shrivelling before their eyes. “We watched for a period of a few months and the tumours just disappeared,” says Irvine. After 20 weeks, the patient was cancer-free. “There had been no doubt about her diagnosis,” he says. “But now there was nothing in the biopsies, or the scans.”

Somehow, she had healed herself of arguably our most feared disease. “Everyone was thrilled, and a bit puzzled,” Irvine says, with some understatement. “It shows that it is possible for the body to clear cancer – even if it is incredibly rare.”

http://www.bbc.com/future/story/20150306-the-mystery-of-vanishing-cancer

There’s also the case of John Matzke, who said he used a visualisation technique to heal himself (obviously there’s no evidence whatsoever that this had any effect, but interesting nonetheless). I’ll post another excerpt below:

When the cancer spread to his lung, he was told by an oncologist at the Veterans Administration hospital in White River Junction, Vermont, that it was urgent that he undergo immediate treatment. Matzke was informed that once a melanoma invaded an internal organ, it usually led to a swift death within months if left untreated, and even with surgery his chances of survival were slim at best. Yet instead of going under the knife, Matzke took a month off to physically prepare himself for the hardships of the treatment ahead, such as exercising and eating healthily. He also would later claim that he practiced visualization techniques, imagining his body free of cancer. It is unclear whether this technique had anything to do with what would come next, but when he finally returned to Vermont to undergo surgery, new x-rays showed that the cancer had simply vanished. Matzke’s oncologist, Dr. Joseph F. O’Donnell, would later say of the incredible remission: When John came back a month later, it was remarkable—the tumor on his chest X-ray was gone. Gone, gone, gone.

(I think this may be the man I saw in the documentary)

https://mysteriousuniverse.org/2015/12/spontaneous-cancer-remission-medical-mystery-or-miracle/

 

https://www.ncbi.nlm.nih.gov/pubmed/25367403

CONCLUSIONS:
Psychosocial interventions providing stress reduction and emotional support resulted in trends toward TL maintenance in distressed breast cancer survivors, compared with decreases in usual care.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4559344/

CONCLUSIONS:
As depicted in Figure 3, TA increased approximately 17% over time in the MBSR(BC) group compared to approximately 3% in the UC group. The magnitude of the difference between the groups is approximately 1 standard deviation (SD), which corresponds to a large effect size (Cohen, 1988). TA has the capacity to add DNA sequences, thereby actively increasing TL and preserving healthy cell function (Kim, Han, You, Chen, & Campisi, 2003).

 

Gosh is that it! This doesn't remotely justify your earlier claims that:

Which is what I was taking issue with.

I would say that cancer research generally has the right attitude to mindfulness - a very small part of its overall research effort . It's tinnitus research in the UK which has the focus entirely wrong - with Mindfulness/MBCT and CBT entirely dominating recent research funding to the detriment of other tinnitus research.

 

Also, I'm starting to see a correlation between the loudness of my fan at night and the intensity of my tinnitus the next day, just like the cobra effect. AND that's exactly what the BTA recommends AND SELLS, noise generators. What if they are leading people into harsher tinnitus that way?

 

This is r/wooosh material.

 

Agreed! But I will join the fight against TRT anyway since I'm not a fan of TRT.

Ya'll know that TRT as a whole package is much different than mindfulness and even further from neural plasticity right?

 

I didn't. I'm glad we can agree that TRT should be fought against. Btw I'm not totally against TRT if someone chooses to do it, I'm against them dominating the research and getting any funding for more research.

 

I'm all for neuromodulation. And will just use the wiki definition: Neuromodulation is the alteration of nerve activity through targeted delivery of a stimulus, such as electrical stimulation or chemical agents, to specific neurological sites in the body. It is carried out to normalize – or modulate – nervous tissue function.

We also know that mindfulness acts as a type of neural modulation. The implications, and indeed this is where the research is beginning to look, is the effectiveness of various neuromodulation based treatments is mediated by the cortisol levels of the individuals at the time of treatment.

It would be nice to know, if I'm spending thousands of dollars on a treatment, that my mental state at the time of treatment may have a large impact on the outcome. I'd do things differently leading up to the treatment etc.

It also unlocks keys as to why these treatments work or do not.

 

I invited you - as the self-proclaimed expert - to substantiate your huge claims for Mindfulness's impact on long-term cancer outcomes.

You didn't and haven't. Still waiting for that evidence ....

For someone who claims to be a high-powered manager for a cancer prevention programme you seem to have a lot of time available to spend on tinnitus forums ....

 

I never said high powered

I sent you two links to seminal studies. If you can't understand it, the burden is not on me to explain it to you. I could care less if you believe me. I really have better things to do than educate you, especially since you seem incapable of discourse. However, for the benefit of the unbiased observer I provided those studies.

 

I understood them all right. I asked if that was really all you had - as they don't justify any of your claims. Seems like it is.

All the studies you have cited show is that mindfulness might be a little bit helpful for some cancer patients provided they are following all the normal cancer treatment protocols. Nothing you have produced so far has remotely justified what you claimed earlier.

 

David, you seem to spend most of your time attacking others, trying to discredit them. What have you done to objectively help the cause? I ask because all I’ve ever seen you do is pull apart other people’s efforts. You are the epitome of useless.

If you have a problem with the BTA then take some form of action like you said you were going to do. Otherwise, why keep repeating the same arguments? To become valuable, and to help in a realistic way, you have to actually do stuff.

You never listen to what the other side has to say in any debate I’ve seen you in. You just move the goalposts. It’s hard to achieve anything with an attitude like yours.

 

I have focused on the issues related to tinnitus - I have never once attacked someone's character as opposed to their arguments.

You in contrast have led a personal onslaught on my character and personality. I think it's really ironic that you have claimed to be leading a fund-raising for someone who lost their life to suicide when you have made the most unpleasant personal attacks on someone whose personal situation you have absolutely no idea about.

 

Ok, so what have you achieved so far to help people? You seem far more preoccupied with what the BTA are doing when it would be far more effective if you did something proactive.

Where have I done this? I have asked you some simple questions, but you have never answered them. Other than that I have never personally attacked you, ever. You have an odd way of viewing the world if you believe that.

 

Just a few wise words.

With having no visual eye contact or voice, when posts are written and read they can come across like shouting to someone and not be understood as intended, sparking a bit of heated debate.

We all can read each other's views and it makes for a better reading when they feel calm to read...

 

No not shouting Glynis - personal abuse. - phrases like "you are the epitome of useless" are simple personal abuse. They should not have a place on this forum. I have nothing but contempt for the person using them. There are quite a few people on the forum with a lot of scepticism about what's actually going to happen to that fundraising money he's in charge of.

 

The people who donated have the say. Those who did not do not have a say.

Not sure where you got this from, have you spoken to the family and been informed of this?

 

I get quite impassioned at the whole debate of people who freely criticise but do not have an interest to stand up to be counted.

I have been with this site and doing work to advocate for people with tinnitus for a lot of years. In that time I have seen many people come and go. I have seen virtually nobody (given the numbers who use and visit Tinnitus Talk) stand up to be counted.

Some truly awesome people gave up their free time recently for the Expo, which was humbling, along with moderators who give up their valuable time to help others. And @Ed209 is selflessly giving up his time to try and do something good in memory of Daniel.

Why is there not more activism... ? It's principally because the people who will take action are often driven professionals that are already busy in what they do. They just lose the drive and lose their patience because of a load of people who have all the time in the world to shout and criticise, but seemingly none when there is an opportunity to do something that makes a difference.

The endless critique fatigues. Arguing for the sake of it fatigues. The people who do this perpetuate their own fates. You will drive researchers away, you will prevent movements from taking hold, you will actively hold things back by personal crusades. What researcher wants to go into an area where there is a proliferation of hate speech against some of the field?

 

Did these people donate? If not, why should they care? I don‘t think any of the donors said anything negative in the voting thread yet.

 

It would be lovely to see more members getting involved with Tinnitus Talk and supporting events.

The Talking Tinnitus Expo in Birmingham was great and I for one felt proud to be a part of it with the rest of our team.

@Steve, @Hazel and @Markku worked and produced a great video introduction but the response was poor for all their hard work.

I hope more about the Conference and Expo will get to be put up on here and hope for a better reaction and praise given from members.

Tinnitus Talk and Tinnitus Hub have more to offer than the forum to post on. The support of more members is needed to raise awareness of tinnitus and to get involved with Advocate work (if one has free time and skills).

love glynis

 

Very well put Glynis.

Things like that are the perfect opportunity for people to get involved and have their say about how the patient voice and advocacy for patients can be presented.

If all that a person is able to give is their time then why not make that time count for something?

 

That’s really well put and I agree 100%, more action less speak is needed. I feel somewhat guilty, I truly want be of some help but if I’m completely honest where I am at the moment in my life isn’t great and I highly doubt I’d be of any use. I’m working on this and I’m hopeful I’ll be of some help in the future.

I just want to thank everybody for all their hard work, all the people in front and behind the scenes, I know you guys work your bums off and I’m extremely grateful.

 

Given how hugely liked and respected Daniel was it is disappointing that the fundraising in his name did not raise more than it did. A significant part of the blame for that lies with @Ed209. He spent a lot of time on the forum berating other people for being mean, not interested, lazy etc, etc. That was all hugely counter-productive - it annoyed people and made them less likely to donate.

 

Please don't use Daniel Ballinger's fund to score brownie points...

Let's see you being more positive and working together promoting tinnitus awareness and less picking!

That was said in a nice way

love glynis

 

I genuinely believe what I have just said to be true - though as I am reluctant to criticise any fundraising I probably would have not said it had I not been the subject of such prolonged personal abuse from @Ed209.

 

If that is an apology then it's kindly received.

@Ed209 is a well loved and respected member and would be nice in time that members felt that same way about you.

Respect is a two way thing.

Arguments or falling outs or abuse by anyone needs reporting by the report button and not be entertainment for others...

Fresh start needed... You can be nice and have your say

love glynis

 

Eeeew, don't be attacking Ed when he clearly has done great things and have helped many people... He is a very valuable resource not just to this forum but to anyone he ever meets. I don't even know the guy and not even a friend, but I've got massive respect. Whatever, I'm out.