Question

Looking around the internet I was surprised and disappointed to find a whole range of companies and therapists selling treatments and ‘recovery programmes’ that they claim can successfully be used to treat or even cure ME/CFS. Some of these companies are clearly making a lot of money out of desperate people who are willing to try anything that is claimed to help. What can be done to stop these scams?

Answer

We share your concerns and over the years we have reported a large number of people and companies to the regulatory authorities for making unproven claims about treatments for ME/CFS. There are 4 main ways of dealing with them:

1. The Medicines and Healthcare Regulatory Authority (MHRA) will investigate unproven therapeutic claims relating to drugs, supplements, and medical devices, especially where they are likely to be contravening the 1968 Medicines Act.
2. The Advertising Standards Authority will investigate adverts from companies and individuals who are making unproven therapeutic claims. Adverts can be in publications, on TV, or on a website. We normally refer adverts to the ASA when they involve claims that cannot be referred to the MHRA i.e., when they do not involve medicines.
3. The General Medical Council will investigate doctors who are offering or promoting treatments that are unproven or unsafe.
4. The media will occasionally investigate a more serious scam and we have been involved with undercover work for BBC television programmes in the past.

• Please let us know if you have found an advert or a company that is making unproven therapeutic claims for ME/CFS or for Long Covid: Feedback@meassociation.org.uk