Chronic fatigue syndrome may hold keys to understanding post-Covid syndrome: David Tuller and Steven Lubet July 21, 2020

[Jaybee00]

The 6 months wait was because they wanted it confused with chronic fatigue, a common symptom of many diseases, and they wanted the association with the original infection destroyed so they could present ME as a new form of neurasthenia to be treated psychologically.

Do you have evidence to support this statement? By “they” do you mean all the people involved in the development of these several diagnostic criteria?

Unfortunately this sounds like a non-evidence based conspiracy theory.

 

[chrisb]

There is certainly evidence from 1989 which could be considered a basis for reasonable inferences to be drawn. What standard of proof do you require? It would be a chore to dig it all out again.

It would only be necessary to show the intent behind the original definition. Desire to retain as much as possible of the existing description as possible. could be assumed for the later definitions.

Remember, you could have cured your effort syndrome if you had really wanted to. That is in a paper used with the description of the condition being variously changed to PVFS and CFS.

 

[Andy]

These were all developed after CFS. One of the harms that was done to us by the invention of CFS was the artificial categories of a 6 month wait and the emphasis on fatigue which muddled the character of the disease.

The 6 months wait was because they wanted it confused with chronic fatigue, a common symptom of many diseases, and they wanted the association with the original infection destroyed so they could present ME as a new form of neurasthenia to be treated psychologically.

The authors of the IOM criteria say

Regarding the duration of the illness, the proposed criteria require 6 months to make a diagnosis in light of evidence that many other causes of similar fatigue do not last beyond 6 months (Jason et al., 2014; Nisenbaum et al., 1998).

and

Regarding the duration of fatigue, the Fukuda definition and the Canadian Consensus Criteria (CCC) require 6 months for a diagnosis of ME/CFS. This 6-month requirement is supported by Nisenbaum and col- leagues (1998), who showed that unexplained fatigue lasting for more than 6 months was related to symptoms included in the ME/CFS case definitions and that most other causes of similar fatigue do not last beyond 6 months.

The authors of the CCC criteria say

Idiopathic Chronic Fatigue: If the patient has unexplained prolonged fatigue (6 months or more) but has insufficient symptoms to meet the criteria for ME/CFS, it should be classified as idiopathic chronic fatigue.

None of which sounds like an attempt to continue to include other reasons for chronic fatigue in an ME/CFS diagnosis.

 

[adambeyoncelowe]

The Ramsay definition didn't need 6 months, but I don't think other criteria added it to conflate ME with CF (some of the authors of these criteria prefer the name ME, for example).

Likewise, I've seen it argued that if we don't have the 6-month wait, too many patients with self-limiting PVFS will get diagnosed with ME and then recover, inflating recovery rates in ME and leading to inappropriate treatment.

 

[Sly Saint]

The Ramsay definition didn't need 6 months, but I don't think other criteria added it to conflate ME with CF (some of the authors of these criteria prefer the name ME, for example).

Likewise, I've seen it argued that if we don't have the 6-month wait, too many patients with self-limiting PVFS will get diagnosed with ME and then recover, inflating recovery rates in ME and leading to inappropriate treatment.

Why I think it would be prudent to diagnose PV[F]S (and make a clear note of which virus/infection it refers to) for the first 6 months before diagnosing ME. My GP did this and he made it clear that this was potentially a precursor to ME (as opposed to just a different name for the same condition).

(Unfortunately that link was 'lost' when I moved, my diagnosis was changed to CFS appearing as a 'one off' in a list of ailments.)

 

[Kitty]

Likewise, I've seen it argued that if we don't have the 6-month wait, too many patients with self-limiting PVFS will get diagnosed with ME and then recover, inflating recovery rates in ME and leading to inappropriate treatment.

An argument that I think still has a lot going for it, as long as people are given appropriate pacing advice from Day 1 and understand that it's not a fixed marker. Self-limiting PVS may go on for a year or more in some cases, and by the same token, severe and unrelenting ME symptoms can become obvious very quickly.

 

[Snowdrop]

I absolutely agree that science needs to consider PVFS as an entity of it's own that is ongoing viral symptoms that have not resolved in the one or two weeks normally associated with virus recovery and that will in time resolve on their own and lead to recovery.

I don't think this needs to be taken as a given but defined and examined and tested for data that reflects the reality of the situation. There will be outliers that take longer to resolve and I don't even know what kind of time frame to suggest except that 6 months may not be long enough.

But I do think this should be taken seriously and looked at. Biological research could even lead to clues as to why some people recover and others do not.

 

[NelliePledge]

6 months or whatever It’s all academic to people with gradual onset. I was probably over 6 years before I discovered ‘CFS’ and got my dr to agree that’s what was wrong with me. Of course there are some people with ME who probably wouldn’t count me as having ME because of that.

 

[Kitty]

6 months or whatever It’s all academic to people with gradual onset. I was probably over 6 years before I discovered ‘CFS’ and got my dr to agree that’s what was wrong with me.

My onset was quite gradual too, though it took me a bit longer to discover ME (23 years!). I'd never heard of it until a GP at my practice suggested it.

I'd had several sudden remissions during that time, leading to 80 to 90% of function returning. Each time I started really struggling again, the symptom giving me the most trouble was different. It never occurred to me that the gastroparesis with severe weight loss I developed at 17, and the muscle pain and weakness that I had in my late 20s, could be due to the same thing.

Also, I'd had fatigue since I was at school, so I'd absolutely no idea that I had fatigue. I thought everyone felt like that!

 

[Snowdrop]

To me gradual onset just suggests possibly an initial mild response that is not easily identified with the initial infection. But not a lot about any of this is clear. Investigating further would prove useful. Rather than the usual ignoring people and fobbing them off on silly treatments.

But I expect there are other interpretations. It would be good to pin it all down.

 

[Kitty]

To me gradual onset just suggests possibly an initial mild response that is not easily identified with the initial infection. But not a lot about any of this is clear. Investigating further would prove useful. Rather than the usual ignoring people and fobbing them off on silly treatments.

But I expect there are other interpretations. It would be good to pin it all down.

Indeed – there's also the possibility that it starts as a low level post-viral syndrome in some, which is why I'm so concerned about post-Covid patients being given pacing advice from the outset. I don't know whether there is ever a possibility of full recovery in people who appear to develop ME after PVS, but there could be.

In me, PEM has always included sore throats and lumpy neck glands on waking; I'm sure I didn't have this at the outset, though, even though I was working full time. I had fatigue and brain fog, weight loss that I couldn't improve by eating like a horse (my BMI would have been 16), and burning thigh muscles if I walked any distance. The characteristic swollen throats only began between eight and 12 months after I first got ill.

 

[Mithriel]

Do you have evidence to support this statement? By “they” do you mean all the people involved in the development of these several diagnostic criteria?

Unfortunately this sounds like a non-evidence based conspiracy theory.

By "they" I mean the CDC people especially Stephen Strauss and the Oxford definition people. Everything since then flows from that. The ICC and the SEID were trying to make sense of the situation as it exists now but as we have seen with long covid, the pacing and care with exercise needs to start soon not wait for 6 months when the disease has become worse.

ME, with its problem of exercise needs treated from the start not after an arbitrary delay when lots of damage could already happened. Saying that it only becomes ME after 6 months is different from saying that it takes 6 months to distinguish it from other post viral states.

(I am not considering gradual onset which has its own problems, like any disease which comes on slowly. It is not less ME or any less important just not relevant to what I am saying).

SW and his mates believed that all chronic fatigue, from being tired all the time to bedridden, was just a single behavioural problem on a spectrum. They were able to lay claim to ME but not MS or RA for decades.

Sadly, when you talk about ME it is all too easy for listeners to think it is a non-evidence based conspiracy theory because no one wants to believe that such a thing could be possible among doctors and medical experts.

As Chrisb says there is plenty of evidence out there but continually describing it to new people is exhausting. A good place to start is Osler's Web. For a flavour of the times, it describes how Strauss wanted muscle biopsies from patients at Tahoe. Dan Peterson was furious when one 19 year old girl came back with a 3 inch wound on her thigh. When he complained Straus said he was not a plastic surgeon! The results from these biopsies were never revealed.