Washington Post: Pacing helps, but at a cost for long covid fatigue

The Washington Post has a long article on the use of pacing for those with Long Covid and includes many references to ME/CFS.

Dr Charles Shepherd writes to the author

Dear Amanda

I have just been reading your very comprehensive and helpful article on the use of pacing for people with Long Covid and ME/CFS.

Thank you for including all the information on the important overlaps between Long Covid and ME/CFS – because many health professionals (and most people with Long Covid) are just not aware of this link..

The ME Association has been providing information and support to people with Long Covid dating back to May 2020 – when it became apparent that significant numbers of people were not recovering from COVID-19 and developing a post-covid syndrome that included symptoms that are the same as ME/CFS. And in some cases, people with Long Covid were meeting diagnostic criteria for ME/CFS.

Since then we have continued to cover all aspects of Long Covid on our social media where we regularly report on research and treatment developments.

And we are very happy for people with Long Covid to join the ME patient community and take part in our discussions on MEA Facebook – as they now do.

We have, however, been critical of the way in which huge amounts of money and research capacity has been directed at the cause and treatment of Long Covid when people with ME/CFS have faced a serious lack of government funded biomedical research into the cause and treatment of ME/CFS for many years.

We have also been critical of the way in which many clinicians and researchers have failed to acknowledge the important clinical and causative overlaps between Long Covid and ME/CFS and the failure to realise that what we know about the cause and management of of ME/CFS – especially activity and energy management – could help people with Long Covid.

MEA GUIDE TO LONG COVID AND ME/CFS

This is our new guide to the clinical and pathological overlaps between ME/CFS and Long Covid.

This guide also explains how we can help people with Long Covid who have ME/CFS like symptoms – debilitating fatigue and post exertional malaise, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, PoTS etc.

Free MEA website download:

Dr Charles Shepherd writes on pacing and activity management

Activity and energy management, which should include physical, mental and emotional activity, has to take account of the stage (ie how long you have been ill), severity, progress and variability of your illness.

In other words, the type of activity and energy management programme you carry out has to be done on a very individual and flexible basis.

The type of activity and energy management programme we have long recommend is a process called pacing – which is consistently reported by people with ME/CFS to be a very safe and helpful way of learning to cope with ME/CFS.

We have MEA an information leaflet covering activity and energy management, and pacing, in more detail

This is a free download while it is being updated

It is also worth reading the sections on activity and energy management (1.11.2 – 1.11.14) in the new NICE guideline on ME/CFS

The other key point we would make is that getting the right balance between rest and activity is often a do-it-yourself process involving a degree of trial and error.

However, it is extremely helpful to have some good initial advice on establishing an appropriate baseline of safe activity levels, along with how to gradually and flexibility increase what you are able to do – as well as cutting back when appropriate

To do so you really need some help from a health professional – doctor, OT, physiotherapist – who fully understands the way to deal with this key aspect of ME/CFS management

And if you want something to show to a physiotherapist, or other health professional who is supervising activity management but appears to be giving unhelpful or even harmful advice, this is an article from a professional journal for physiotherapists.

Extracts from the article

While pacing is a new strategy for those with long covid, it’s been used for years by people who suffer from ME/CFS. The cause of ME/CFS is not understood. Experts believe the disease can be triggered by illness, infection or stress.

Before she learned how to pace correctly, Kaia Arrow, 32, of Toronto, often needed to stay in bed and could rarely leave the house.

Arrow has lived for 12 years with ME/CFS, which was triggered by a post-surgical infection. She said that over the past few years she has gotten better at pacing, and now she can usually leave the house a few times a week and has started cooking again every few weeks.

“Pacing made it so that I could predict what I could do, like on a small level for the first time in over a decade,” said Arrow. “I can cook for my husband. I can cook for my friends. Not frequently. But, that’s more than I could do before.”

“Pacing is being active when you’re able, and resting when you’re tired, rather than pushing through symptoms,” said Jaime Seltzer, director of scientific and medical outreach at #MEAction, a nonprofit advocacy group for people with infection-associated chronic illness.

The effectiveness of pacing for long covid patients with ME/CFS hasn’t yet been widely studied. But the World Health Organization recommends the strategy for long covid patients who experience a worsening of symptoms after activity, which is known as post-exertional malaise.