Question
A huge amount of money is being spent on research into the cause and treatment of Long Covid. Given all the overlaps between Long Covid and ME/ CFS are there any benefits emerging from Long Covid research that might also help people with ME/CFS? Or is it too early to draw any conclusions?
Answer
We have been following all these research initiatives very closely. The bottom line here is that research into what is causing Long Covid has already confirmed that, just like ME/CFS, there are a wide range of possible mechanisms involved.
Some of the abnormalities being reported in Long Covid are also consistent with what has already been found in ME/CFS, in particular:
- Immune-system activation and increased production of immune-system chemicals called cytokines.
- Reactivation of dormant viral infections such as Epstein-Barr virus.
- Presence of autoantibodies – antibodies that attack body tissues rather than protect against infections and allergies.
- Lowered levels of the adrenal gland hormone, cortisol.
- Defective muscle-energy production, possibly involving mitochondrial dysfunction.
- An overlap with mast cell activation syndrome (MCAS).
- Other abnormalities are either uncertain or not present in ME/ CFS. These include:
- Presence of persisting virus or viral particles, especially within the intestines.
- Presence of tiny blood clots – micro-clots – in small blood vessels called capillaries.
All this research into the possible causes of Long Covid is now translating into clinical trials involving drugs and supplements that are aimed at reversing these abnormalities. Among the more important clinical trials taking place, most of which we are regularly covering on the ME Association website, are:
- Antihistamines – where there is evidence of mast cell activation.
- Apheresis – to remove micro-clots.
- AXA1125 – an amino acid supplement that may improve mitochondrial function and energy production. Some encouraging results from a preliminary clinical trial in Oxford have now been published and we are in discussion with the group involved.
- Low dose naltrexone – with research in Canada being carried out by Dr Luis Nacul, who also works at the UK ME/CFS Biobank.
Overall, there is some encouraging news to show that all this research into the cause of Long Covid is starting to produce results that could also be helpful for people with ME/CFS. In relation to treatment, if there is robust evidence of efficacy for any treatment in a Long Covid clinical trial then this could well lead to similar trials taking place in ME/CFS.
More information
- The Free ME Association booklet, Long Covid and ME/CFS, Are they the same? examines both conditions in more detail.
- An article by Dr Charles Shepherd (ME Association Medical Adviser) in BMJ-Evidence Based Nursing examines caustion | November 2022
See also:
Medical Matters:
- Mast Cell Disease.
- Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid.
Website Blogs:
- Can antihistamines be used to treat Long Covid? | February 2022
- Dr Luis Nacul receives CIHR funding for research on post-COVID fatigue syndrome: LDN | March 2022
- Dr Shepherd on Treating Long Covid with Histamine Receptor Antagonists | June 2021
- Long Covid Research: Axcella treatment helped some patients recover from physical and mental fatigue | August 2022
- Mitochondrial dysfunction in Long Covid and ME/CFS | June 2022
- The Guardian: Possible link between blood clots and Covid symptoms investigated | June 2022
The ME Association's statement on Apheresis:
Related Categories
MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.