Information about ALS on the Internet: how to separate the wheat from the chaff?


The Internet has plenty of information available on ALS. Unfortunately not all of this information is equally reliable. How can you separate the wheat from the chaff?

The Internet nowadays offers easy access to scientific and medical information. This is supported by the numbers: recent American research discovered that in 2014 more than 70% of internet users searched for information about health.

These (new) scientific ideas on websites form an important source for ALS patients as well. Downside is there are many websites that spread false or misleading information. Especially after the worldwide Ice Bucket Challenge hype in 2014 a lot of inaccurate information about ALS was to be found on the Internet.

It is in any case a fact that patients with serious conditions easily fall victim to mala fide organisations. So how do you distinguish fact from fiction on the Internet?

Rules of thumb

The following four rules of thumb can already help you:

1) It all begins with knowing the source of the information. Has the study been announced by a trustworthy news agency, by a trustworthy medical society, or by an academic journal? Can you retrieve the same information from multiple trustworthy national news sites or specialised health websites? It is characteristic for the top experts on ALS research to use ‘PHD’, ‘professor’ or others academic degrees. The authority and trustworthiness of these experts can be double-checked by searching for their names on Google.

2) If you read something that sounds too good to be true, it generally is. There are no miracle treatments for ALS. Therefore avoid websites that promise an instant cure for ALS.

3) Be cautious of websites with too many advertisements, personal testimonies, excessive positive language, and/or websites that charge for treatments or services.

4) There are websites that do not follow the standards of scientific research. Certain commercial websites offer, for example, new and promising treatments to ALS patients on the condition that they are prepared to cough up a large sum of money. These so-called promising treatments often do more harm than good. It is also good to know that there exist strict guidelines for scientific research aimed at commercialising new medications or therapies. These control mechanisms are designed to protect patients from the possible harmful side effects of these treatments. Riluzole (Rilutek), moreover, is presently the only recognised method of treatment for ALS patients.

Trustworthy websites

ALS Liga closely monitors rumours and untruths on the Internet. Our rule of thumb here is: if something we read sounds too good to be true, it generally is.

ALS Liga also scours the Internet for trustworthy information about ALS. We often use the following websites:

ALS Liga
UZ Gent
UZ Antwerpen
Ziekenhuis Inkendaal ("De Bijtjes")
UZ Brussel
Erasmus Bruxelles
UCL Saint-Luc
CHR de la Citadelle

Do you still have questions regarding certain websites? Or do you want to know more about trustworthy websites? Feel free to contact ALS Liga!