[Book] ME/CFS and Long Covid: Diagnosis and management of chronic fatigue syndromes, 2025, Spickett

[forestglip]

ME/CFS and Long Covid: Diagnosis and management of chronic fatigue syndromes

Gavin Spickett

[Line breaks added]

Abstract
This book covers the history and characteristic symptoms of ME/CFS and Long Covid in adults. Children are not discussed in detail.

It discusses the extensive differential diagnosis in patients presenting with chronic fatigue. Current theories of the aetiology and pathogenesis of the conditions are also discussed. The possibilities of chronic viral infection are discussed together with the role of chronic neuroinflammation.

Treatment and management of patients is discussed, including activity management, supporting psychological therapies and drug therapy for symptom management. Information is given on what to tell patients and how to deal with issues relating to education, employment, and benefits.

Web | Oxford Infectious Diseases Library | Paywall

---

Requested to be posted by @Nightsong

 

[forestglip]

Contents:

1 The history of chronic fatigue syndromes including ME/CFS and Long Covid

2 When to suspect ME/CFS or Long Covid

3 The diagnosis of ME/CFS and Long Covid

4 Primary ME/CFS or Long Covid versus secondary chronic fatigue

5 Theories of causation

6 What do you tell a patient?

7 Children and young people with ME/CFS or Long Covid

8 What therapies are helpful?

9 What drug treatments are available?

10 Prognosis

11 Work, school, university, wheelchairs, and travel

12 Benefits and pensions

13 Conclusions

 

[Utsikt]

Lumping together LC and ME/CFS is not a useful approach. Based on the abstracts of the chapters, I’m not very impressed.

Chapter 5 covers the main theories for the development of fatigue, including, genetic, immunological, infective, autonomic, endocrine, mitochondrial, clotting, gut microbiome and virome, psychiatric, and psychological. It also provides a tentative synthesis of current thinking, focused on possible viral persistence in the brain and consequent chronic neuroinflammation. Many research studies into ME/CFS and Long Covid are hampered by insufficient numbers, lack of appropriate control groups, and inappropriate patient groups (longstanding and new patients combined). The exact pathways causing chronic fatigue and associated symptoms in ME/CFS and Long Covid have not yet been fully explored. Many different viruses and some bacteria may trigger chronic fatigue. In some cases of Long Covid, there is evidence for persistent viral presence in the brain, long after the acute infection has resolved. Further work is required to identify viral persistence in ME/CFS. A disordered immune response to infection is important. There are markers of chronic inflammation. Chronic viral persistence may lead to chronic inflammation, including neuroinflammation. This can lead to endocrine abnormalities due to interference with the HPA.

Lots of speculation and meme theories.

Chapter 8 deals with general non-drug approaches to the management of ME/CFS and Long Covid, based around published guidelines and current literature. It covers activity management, pacing, CBT, mindfulness (and related therapies), and diet. The management of relapses and the severely affected are covered. Current advice focuses on activity management and pacing. Graded exercise is no longer routinely recommended. Different therapies may work for individual patients: there is no ‘one size fits all’. Other therapies with weaker evidence bases are also discussed. The management of the severely affected is difficult in the United Kingdom, as appropriate facilities are very limited.

«No one size fits all» implies that something works for some. We don’t have the evidence to say that anything works for anyone.

Pacing is also listed under therapies, which is wrong. It’s a management strategy.

 

[Jonathan Edwards]

This looks like a standard BACME approach based on a pretence at knowledge within a framework of not understanding how to asses the evidence.

 

[Trish]

Extract

Dr Gavin Spickett is a retired consultant in immunology, allergy, and general medicine. He trained in medicine at the University of Oxford and earned his DPhil at the MRC Cellular Immunology Unit, Oxford. He completed general medical training in Ipswich and trained in immunology, allergy, and immunopathology at the MRC Clinical Research Centre, Harrow, and the Department of Immunology at the John Radcliffe Hospital, Oxford. In 1991, he took up the position of consultant clinical immunologist, allergist, and general physician in Newcastle, where he worked until retirement in 2021. During his career, he developed the Regional Clinical Immunology and Allergy service and the associated laboratory service. He established and led the Regional Chronic Fatigue Network and was the lead clinician for ME/CFS at the Royal Victoria Infirmary. In 2017, he was awarded a Lifetime Achievement Award by the UK Primary Immunodeficiency Network for his work for patients with primary immunodeficiencies.

Chapter 6 covers what to tell patients about the diagnosis and management of ME/CFS and Long Covid. This should include discussions of current science, approaches to treatment, warnings about inappropriate or unhelpful alternative treatments. Common questions include prognosis, drug treatments, exercise including managing post-exertional malaise, pregnancy, and dealing with relapses. Patients should be signposted to appropriate information and patient support groups. A diagnosis should not be given without a careful history, examination, and at least the minimum set of investigations. It needs to be presented in a positive way, stressing what can be done to help. Females of reproductive years will be anxious about the impact on pregnancy. Discussion of boom and bust and how to deal with relapses is very important.

Chapter 10 covers the outcome and prognosis of ME/CFS and Long Covid in adults and children. Good long-term outcome data are lacking. Children and adolescents may have a better prognosis than adults. Female sex, severity of initial respiratory illness, and concomitant mental health issues seem to be risk factors for prolonged post-Covid symptoms. Similar findings have been identified in other studies of post-infectious chronic fatigue. Early diagnosis and intervention improved outcomes. The use of antivirals in Long Covid may lead to improvements in some patients. Some patients with ME/CFS and Long Covid will show a relapsing and remitting pattern of illness, while others remain long-term disabled, some seriously.

 

[Evergreen]

It needs to be presented in a positive way, stressing what can be done to help. Females of reproductive years will be anxious about the impact on pregnancy.

Females of reproductive years will also be anxious about keen to know whether they'll be well enough to look after their children. Not just if they can be used as a vessel for them.

 

[Alinda]

Females of reproductive years will also be anxious about keen to know whether they'll be well enough to look after their children. Not just if they can be used as a vessel for them.

Horrible wording!!;

 

[Beth]

He was my consultant, don't have the brain or energy to go into it, but royally pissed off he thinks he's in any position of writing about diagnosis and management, to be fair I haven't read what he's written, particularly about severe m.e., he's been retired for years and I can only hope whatever knowledge/experience he thinks he has has come from deep reflection and regret, are we to expect more of this now decode has made us relevant?

 

[alktipping]

The publisher could of saved themselves a lot of money with this cash grab book by simply having an AI do it .

 

[Sean]

Graded exercise is no longer routinely recommended.​

NICE explicitly recommended against it.

 

[Midnattsol]

Females of reproductive years will also be anxious about keen to know whether they'll be well enough to look after their children. Not just if they can be used as a vessel for them.

This! And while yes, sure we did wonder if my ME would be an issue during pregnancy, there wasn't exactly any evidence to guide us to make a decision either way.

Horrible wording!!;

Quite.

 

[Evergreen]

Horrible wording!!;

I know. The only relevant study I know of, Schachterle et al. 2004, frames it similarly, all about fearful females that can be reassured by physicians.

I wonder do men with ME/CFS who are considering fatherhood get a mention in Spickett's book?

He was my consultant, don't have the brain or energy to go into it, but royally pissed off he thinks he's in any position of writing about diagnosis and management, to be fair I haven't read what he's written, particularly about severe m.e., he's been retired for years and I can only hope whatever knowledge/experience he thinks he has has come from deep reflection and regret, are we to expect more of this now decode has made us relevant?

Oh Beth, I'm sorry. I would feel the same if the doctor who said to me "You could always have a baby. Some women feel better during pregnancy." wrote a book. I remember trying to talk with him about the aftermath of said pregnancy, i.e. a little human needing care that I knew I could not provide, and he just looked at me like I was a weirdo.

This! And while yes, sure we did wonder if my ME would be an issue during pregnancy, there wasn't exactly any evidence to guide us to make a decision either way.

Yeah, and look, we're not alone, in the Schachterle et al. 2004 study, the most common reason for not having children was a fear of judging that they wouldn't be able to raise them:


I'm so glad you managed to have a child, @Midnattsol and that it has worked out OK for you. I have watched your story and was so happy for you and your partner that you went for it and that it worked.

I had to make the opposite decision with my husband, unfortunately. And it was the right one, as I continued to deteriorate for 10 solid years, but a very hard one. If we had had a child, I think it's likely I'd be very severe rather than severe, and it's possible the marriage would not have survived because of the strain on my husband who would have essentially become a single father while trying to be the breadwinner and somehow provide care for me. And our much-wanted and much-loved child(ren) would not have had the life we would have wanted them to have at all. Unless I was in the lucky 7% (A+C in table 2 below) who improved after the pregnancy, it just would not have worked for us. (Am not including F because they may only have improved back to where they started.) If my ME/CFS had been stable rather than constantly deteriorating, we would have made a different decision.

But of course, it's also possible things would have worked out much better. There are plenty of people with ME/CFS, including severe ME/CFS, who have children (though I think usually they were less severe when they had them) and they've managed well.

[Table from Schachterle et al. 2004]


I don't like that people looking at Schachterle et al., whether women/couples trying to decide or health professionals advising them, are likely to see this is the abstract and not notice the error:

After pregnancy, there was no change in CFS symptoms in 21 (30%), an improvement of symptoms in 14 (20%), and a worsening of symptoms in 35 (20%) of the subjects [should read "worsening of symptoms in 50%" as per table 2 above].

I find there is far too much emphasis on reassuring presumed fearful females, and too little on gathering good quality data that could help women and men who are considering having children to make the decision that's right for them.

I don't find it particularly reassuring that:

In summary, this study did not find evidence that pregnancy worsens the symptoms of CFS in most women.

when they found that 50% were worse afterwards.