Question

Having read a large number of reports from people who are taking LDN, I would like to give it a try. My GP says that he knows nothing about this drug being used in ME/CFS and has refused to prescribe it on the NHS. I also see a consultant rheumatologist privately and he won’t issue a private prescription.

I know that there’s a pharmacy in Scotland that supplies LDN but I want to use it under proper medical supervision. Why is it so difficult to just try taking a drug that may be of benefit?

Answer

As you are probably aware, naltrexone is a drug that is normally used to help people withdraw from opiod/morphine-type drugs. However, at much lower doses (i.e. LDN) it is claimed that it can reduce inflammation and correct abnormal immune system responses. Consequently, LDN is being used by people who have a wide range of medical conditions ranging from multiple sclerosis to inflammatory bowel disease.

Whilst there is a lot of patient evidence that LDN is helpful in the management of these conditions, there is very little evidence from well conducted clinical trials that have compared LDN to a placebo drug.

As there haven't been any well-conducted clinical trials to assess its safety and efficacy in ME/CFS, the NICE guideline committee, which assessed all the evidence for drug treatment of ME/CFS, decided that it could not recommend LDN for use in ME/CFS in the new NICE guideline.

Consequently, it's highly unlikely that a doctor would prescribe LDN on the NHS in our current state of knowledge. Most private doctors would also take a very cautious view.

On a more positive note, there are now at least three clinical trials taking place to assess the use of LDN in people with Long Covid, including some people with post-Covid ME/CFS. The MEA is funding one of these trials which involves people with post-Covid ME/CFS. See the MEA website announcement.

We may have some results from these trials later in the year. If it can be shown that LDN is a safe and effective treatment for ME/CFS, NICE will then have to decide if a recommendation can be made.

• Please let us know if you are using LDN, or have been using LDN.