• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Dr David Tuller: From UK’s National Health Service, “Your COVID Recovery”


Senior Member
Here is Dr David Tuller's new blog.


Trial By Error: From UK’s National Health Service, “Your COVID Recovery”

5 AUGUST 2020

By David Tuller, DrPH
In the UK, the National Health Service has launched a website called “Your COVID Recovery,” part of its strategy for coping with the after-effects of the coronavirus pandemic. This effort is geared toward “supporting your recovery after COVID-19.” In other words, it appears to be targeting the “long-haulers,” as those experiencing lingering symptoms after an acute bout of Covid-19 have been called. These prolonged medical complaints have been given the collective name of “post-Covid syndrome.”

Unfortunately, the site does not mention—unless I missed it, which is always possible–the salient fact that many people currently reporting such symptoms did not obtain a coronavirus test when they were sick because of supply shortages and restrictions on who qualified to get one. Furthermore, the accuracy of the coronavirus tests have varied, depending on the protocol for obtaining a sample, the point during the illness cycle at which it was taken, and other factors. Some patients who have been presumptively diagnosed by clinicians with Covid-19 have tested negative for the virus.

I’m not dissing the entire effort. People are desperate for information. The site does provide caveats about the many unknowns regarding the long-term course of illness and the ultimate prognosis. It provides some helpful resources, including an overview of the range of possible post-Covid symptoms–problems with taste and smell, persistent cough, musculoskeletal pain, and so on. That’s all good.

And much of the advice in Your Covid Recovery is generic, common-sense stuff—stuff that grandma might have suggested.
Last edited by a moderator:


Senior Member
Generally in the UK what is happening in the NHS is preferring the term COVID long hauliers instead of ME/CFS. It has put out multiple recommendation documents based on the existing ME/CFS advice which boils down to CBT and GET as treatments and other nonsense. Given that is the general treatment in the UK for ME its not really a surprise to find them treating the new potential sufferers the same way. It's still disappointing, you would have thought after the letters to the lancet about PACE they might have learnt, but they seem to me to be doubling down on the psychosomatic approach. The NHS intends to review the guidelines in April 2021 but given all the advice being pumped out about COVID 19 and their failure to call long hauliers what they are it's not a good sign that the changes they intend to make will actually fix the treatment options.

“You are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself.”

That sums up the NHS completely for me, just walking into a doctors office could be the singularly worst thing you ever did with your life.

I was going through SARS (the first one) papers the other day and they reported 50% of SARS sufferers had PEM and were diagnosed as having ME/CFS afterwards and now to this day 10% of those that caught SARS still have ME/CFS. It is a mighty good thing that didn't become a pandemic because it would have devastated the world. But in the Irish press a day or two ago was surveying nurses (a population much more likely to get tested for Covid-19) and 41% of the nurses who had COVID-19 have fatigue issues now. That isn't much below SARS so it's not unreasonable to anticipate maybe 8% with long term ME/CFS in 20 years time. If the worlds answer to that is CBT/GET I loose hope in humanity completely.