Getting LDN (low-dose naltrexone) in the UK: an ME/CFS odyssey

For people with ME/CFS it's like the NHS doesn't exist - if you want any medical treatment at all, you have to go private.

If you’re just here to find out how to get LDN: the best option for me was Harpal Clinic, it cost £165 for the initial 30 minute consultation plus £62.50/month for the medication and follow-up consultations. They charge the same regardless of the dosage. The consultations can be either in person, by phone or by video, and it takes up to two months to find out if the medication will work.

I wasn’t joking when I called this an ‘odyssey’. ME/CFS is a debilitating, disabling condition that’s as serious as HIV, multiple sclerosis or cancer, yet NHS doctors know almost nothing about it, and vaguely suspect that you, the patient, are making the symptoms up. So you have to do everything yourself, from learning about the disease, to researching possible treatments, to picking the one that is most likely to help, to figuring out how to get it. This process took me months.

As I’ve been reading about ME/CFS I’ve been struck by something: the NHS doctors and occupational therapists I’ve interacted with all insist that there is no treatment for ME/CFS. On the other hand, people with ME/CFS who are wealthy enough to afford private healthcare talk about the many, many medications they are on now, or have tried in the past, or are thinking of trying in the future. It’s like people live in a different medical universe, depending on how much money they have. (I imagine that US readers will shrug their shoulders at this, but as a Brit I’m shocked by it.)

I got interested in LDN because the private healthcare people seem to view it as a the first and most basic medication you would take for ME/CFS. It doesn’t work for everyone, but many people find that it helps somewhat, and for a few people it brings a big, life-changing improvement.

Everyone I spoke with was sure that an NHS doctor would never agree to prescribe it, but I had to give it a try. This is a drug that is very safe (there are side effects, but they are unpleasant rather than dangerous, and they go away if you stop taking the drug). There is some evidence behind it, and some private doctors seem to be very happy to give it out, not just for ME/CFS but for a variety of conditions. I had a chronic illness that left me unable to work and had received no medical treatment at all - I couldn’t imagine how my GP could justify refusing to prescribe me LDN.

And yet, refuse she did. The GP was actually sympathetic, at least. She saw on my file that I’d been to see the local ME/CFS service and said that I should ask them for the medication. I had to explain that that service doesn’t include any doctors and can’t prescribe medication, it’s just video consultations with an occupational therapist who teaches you to space out your activities and rest, to prevent post-exertional malaise. The GP said: “well, it sounds like they aren’t meeting your needs” and it felt good to hear a doctor admit that. But, she said, she and the other doctors at my GP surgery have no expertise with low-dose naltrexone, and there is no specialist they could consult with who would share the responsibility for prescribing it. If I had a bad reaction while on the medication I could complain to the GMC, and she could lose her medical license.

I don’t really blame that one GP, I can understand her not being willing to risk her medical license. The problem is that the NHS as a whole behaves as if people with ME/CFS didn’t exist. There are no ME/CFS specialists (apart from perhaps a few fake ‘specialists’ still offering out-of-date and debunked cognitive behavioural therapy treatments). GPs and other doctors know nothing about ME/CFS, and it’s barely even mentioned in medical schools.

I believe this total failure of the NHS to deal with ME/CFS is a lingering effect of years of lobbying by those who falsely claimed that ME/CFS was psychological and could be treated using GET and CBT. Those ideas are now discredited, but the fact that they were dominant in the UK for so long has held the NHS back from developing the expertise to offer actual biomedical treatments for ME/CFS.

I’m horrified and upset that I had to go private to get basic medical treatment. And I’m angry on behalf of others with ME/CFS who need and deserve medical treatment just as much as I do, but who can’t afford to see a private doctor.