My Unexpected Guide; learning from cancer: What websites to visit

Beyond Conventional Cancer Therapies

BCCT graphic

Finding out good information is a big challenge. A blog I wrote last November covered some of my go-to websites - see here (i). In that blog I mentioned the site 'Beyond Conventional Cancer Therapies’ (ii); well I’ve recently been exploring it further and it really does seem to be a very useful site. It is growing slowly but already has quite a lot of 'cancer handbooks' including prostate. It is a big site so I can recommend watching their video to show you around the site before beginning - see here (iii). There are pages on choosing treatments, questions for you’re provider, dealing with emotions, many integrative approaches, treatments and side effects plus blogs, stories, videos and more. To give a taster here are a couple of the useful pages for those of us with prostate cancer:

Approach: they have 7 Healing Practices and pages on how to help manage those: https://www.bcct.ngo/integrative-cancer-care/integrative-approaches-to-treatment/7-healing-practices/

Prostate Cancer Handbook: this section opens with the lines ‘Prostate cancer is a prime example in which an integrative approach may be incorporated not only for reducing the risk of primary prostate cancer, but in treating and reducing risk of progression or recurrence.’ Yet my oncologist dismissed my talk of diets or exercise. The ‘handbook’ goes onto look at US clinical practice guidelines, then treatment approaches from noted specialists, then various protocols and a look under the headings of those 7 Healing Practices about what can help. This for example looks at an overview of the research about foods and prostate cancer, exercise, sleep etc. It is basic compared to what is available elsewhere but still a good starting point if newly diagnosed. There is also stuff on treatment and great summaries of natural therapies and also how to tackle side effects of some of the treatments; https://www.bcct.ngo/cancers-and-symptoms/cancer-handbooks/prostate-cancer

So PubMed?

PubMed has been my go-to site for reputable research; it requires a lot of energy to unpick what some of the research is actually saying - and how useful it is - but all that research in one place is a wonder. Indeed most research scientists use PubMed database - owned and operated by the US National Institutes for Health with more than 30 million citations for biomedical literature from MEDLINE, life science journals, and online books. It is widely recognised for its evidence-based medicine.

Last week in the newsletter from the Alliance for Natural Health (ANH) I read that PubMed is changing (iv). PubMed has a new version and that new version seems to make a load of research far less accessible. In particular the new PubMed lacks the dropdown menu of PMC - unlike the legacy version which gives you access to the other databases such as PubMed Central (PMC), PubMed, MedGen, Books, etc. Indeed the ANH carried out some tests and found that 'The number of articles found on the new PubMed following insertion of same search terms was often considerably less than when we searched the PMC database’.

There were more problems like key scientific papers missing, and they concluded: 'Whatever the reasons, we've demonstrated that PubMed is next to useless as a database and resource for the kind of subject areas central to our mission and vision'. So beware.

Facebook, Google and more

The PubMed news is worrying for those of us wanting good quality research about lifestyle and complimentary medicine. Google and other search engines including DuckDuckGo are already favouring the new PubMed engine in place of the legacy version that allows you to select PMC and other databases.

The issue goes much wider. We have seen how Facebook, Google and others are also reviewing and, some would say, 'censoring' content. I remember reading that Facebook was removing over 80 alternative health sites a couple of years ago - see here (v). Google last June 2019 also had removed massive numbers of pages. For example most of Mercola.com pages were removed from its search results yet the site had fully referenced content that had been at the top of the health search results for over 15 years. Google traffic to Mercola.com plummeted by about 99% in the weeks after that change.

ANH comments on such ‘censorship’ in a different article (vi): "Whilst not blocking access (yet), in doing this, Google is actively removing our freedoms - choice and health being just two of them. Google’s June 2019 update shifted algorithms to make it extremely difficult for individuals to find natural health information in organic searches. Instead, Google prefers mainstream, conventional (approved!) information and places these links in the top ranked search pages.”

It is, of course, very true that unverified health advice can be dangerous - and cost loads if people believe they’re getting a cure with something that’s not actually going to help them. But who is checking the fact checkers? What of free speech? This is a complicated area indeed!

ANH write that 'we have reached the era in which Dr Google may have more influence than the family doctor….Whether we realise it or not, we’re increasingly being faced with an ever-narrowing view of easily accessible information across the main media platforms as content is increasingly tailored and moulded to each one of us — individually. This not only can serve to blinker us from open debate due to our own searching habits, but can actually lead the companies in charge to decide what we should or shouldn't be exposed to’.

There are of course alternatives like the ANH site itself, where there is good info. One article by ANH showed what you can do to help them as they have had Facebook ads blocked; subscribe to their newsletter and share their website content (vii). ANH have several useful articles looking at these issues here. It seems very sad when so much good info is now available from reputable sources that that information is now being made harder to access.

Notes

(i) https://myunexpectedguide.blogspot.com/2019/11/best-websites-for-cancer-support.html

(ii) https://www.bcct.ngo/

(iii) See their video that guides you around the website: https://vimeo.com/345932276

(iv) https://www.anhinternational.org/news/be-careful-what-and-where-you-search