The Search for a Drug for Myalgic Encephalomyelitis

There is no standard drug for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome at the time of writing.
(I use the terms ME and CFS interchangeably on this page) .

Anti depressants can help some with pain relief.  You will see later that they didn't help me.

Some other medicines have been shown in studies to be helpful although they are not widely available at the time of writing.

In this article I share some of the research into Myalgic Encephalomyelitis and drugs.

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Contents for Research into a Drug for Myalgic Encephalomyelitis

  • Can anti-inflammatory drugs help?
  • Rituximab went through several trials. Research discontinued at the time of this update.
  • Cancer treatment may be a treatment for ME - Low dose naltrexone
  • Can antidepressants relieve ME symptoms?
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Research into a Drug for Myalgic Encephalomyelitis. August 2017

Can anti-inflammatory drugs help?

Jonathan Edwards, a rheumatologist, and professor of connective tissue medicine at University College London found that patients with ME/CFS as well as rheumatoid arthritis reported a great reduction in CFS symptoms when they were treated with  powerful anti-inflammatory drugs for their arthritis.

A trial of the drugs on the larger population of people with Chronic Fatigue Syndrome was under way as at August 2017. If the results are in and someone has them, I would be grateful if you contact me or post them in the healing forum.

Research into a Drug for Myalgic Encephalomyelitis. October 24 2011, updated July 2015

Drug for Myalgic Encephalomyelitis, the chronic illness

Rituximab

Doctors treated someone for cancer with Rituximab. This person happened to also have CFS/ME, their symptoms and on the drug, their symptoms disappeared. This led to a hopeful trial. But a further trial or trials?? were not successful.

I am leaving this item here, but my understanding is that research has now been discontinued. I believe the results were not replicated and that some patients with ME/CFS became more ill with the drug treatment.

"Rituximab works by destroying a protein found on the surface of white blood cells that make antibodies, called B cells.

The scientists said the findings suggested that: 'CFS/ME, which is often preceded by an infection, may be a form of autoimmune disease in which B-cells are important'."

Theory for CFS cause: "An infection triggers the body to produce antibodies that then turn against a person's own tissues, perhaps stopping blood from circulating properly". (New Scientist Mag 4 July 2015) This prevents people getting sufficient oxygen and CFS symptoms result.

First study:

Who: Dr Oystein Fluge and Dr Olav Mella in 2004

What happened: They treated a patient for lymphoma who also had CFS. After a few months, the CFS symptoms had disappeared.

Follow up:

2011, one year trial, two-thirds of those taking rituximab had reduced CFS symptoms compared with none of the control group.

Read more at The New Scientist - Relieves Symptoms of Chronic Fatigue Syndrome. Or Daily Mail Article- Cure for CFS/ME

Follow up, reported July 2015

Trial of Rituximab involving 29 people with CFS. 11 of 18 people withChronic Fatigue Syndrome were in remission 3 years afterthe start of treatment. Typically, it took 4 to 6 months to see reduced symptoms.

Reference. PLoS One, DOI:10.1371/Journal.pone.012898

A new research study on 150 people with Chronic Fatigue Syndrome is already ongoing at July 2015. (Katherine - I think this is the one that showed the drug to be unsuccessful.)

Research into a Drug for Myalgic Encephalomyelitis.  3 March 2013

Cancer treatment may be a treatment for CFS - Low dose naltrexone

Low-dose naltrexone may offer help for the millions of people worldwide with central nervous system disorders or autoimmune disorder.

"in people with diseases that are partially or largely triggered by a deficiency of endorphins (including auto immune disorders) ... Restoration of the body's normal production of endorphins is the major therapeutic action of LDN."

See the complete article on

What is low dose naltrexone?

Here you can download an article to take to your Doctor to ask them to consider prescribing you with LDN to treat CFS.

A friend was prescribed LDN for cancer and her M.E. / CFS symptoms cleared significantly as a result.

Many years after writing this, I continue to hear of people with Myalgic Encephelomyelitis who are helped by LDN. I believe there is a facebook group.

Update January 2020 about LDN as a possible drug for Myalgic Encephalomyelitis treatment.
Results: Mixed. From super success to lower success.
Conclusion: further research into LDN is warranted.
Read more at https://www.ldnscience.org/research/pmid31911410

Research into a Drug for Myalgic Encephalomyelitis.  25 Jan 2013

Can antidepressants relieve CFS symptoms?

Research into amitriptaline for cfs pain relief and sleep

Update in 2018.
This item was written back in 2013. Thankfully, my hands have been much more comfortable in recent years. I continue to be disciplined at pacing out activity.

At the time of writing I had had more muscle fatigue and pain in my arms and hands for some time. I asked my Doctor for help for pain relief.

He referred to research and said that Amitriptaline has been found to give pain relief in those with the illnesses MS, Parkinsons and CFS.

I was wary of taking a drug as I still have some Multiple Chemical Sensitivity (MCS).
Like many people with ME/CFS I can also have abnormal responses to regular medicines.
My Dr was very easy going, said I could stop taking the prescribed drug whenever I wanted to.

Amitriptaline is an anti-depressant. For my body weight if I was taking it as an anti-depressant I would take 150g. For pain relief it is prescribed at 10mg, so a much lower dose.

It knocked me out and for the first time I understood the idea of someone WANTING to be in bed and rest.
I thought this might be good for me, but I didn't feel like my usual LIVE self.
I cut the dose in half to 5mg and persevered for a while.

There was some pain relief, but it was inconclusive as I was so tired that I typed less. The ME/CFS pain comes with repetitive movement, so the pain relief could have been down to less use of my arms and hands.

However, I did SLEEP unusually well which I feel sure must have done me some good.

I stopped after a while as I prefer to be more alert and alive. But interestingly, I often sleep longer and better now. It seems the amitriptaline has reminded my body how to sleep.

My conclusion is that amitriptaline is worth considering for pain relief, but personally I will not be trying it again.

I have a friend who deeply regrets the years he spent trying different drugs for Myalgic Encephalomyelitis with horrible side-effects.
I can well imagine how unpleasant it would have been if I had been given the dose for depression.

But PLEASE please make your own decision.

Always remember, it is YOUR body and YOUR decision.

With Love, Katherine

Possible further information: Copy and paste this link for research findings into amitriptaline and its possible relevance to CFS.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3498825/

  • If you are considering anti-depressants because you  live with depression, there are various articles available on this healing website that may be of interest. Follow the link above.

Move from Research into a Drug for Myalgic Encephalomyelitis to see a full list of articles on this website on Chronic Fatigue Syndrome research.
Biological features fround in those with ME/CFS point the way to possible future treatments.

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