British Medical Association: "Known unknowns, and as yet medically unexplained diseases" by Dr David Strain

[Andy]

"Where, then, do we place conditions diseases that we don’t as yet have diagnostic tests for?

Myalgic encephalomyelitis – otherwise known as chronic fatigue syndrome or post-viral fatigue – was first defined in 1984, but its existence had been described as far back as in Pompeii. It affects around 250,000 people in the UK, with a preponderance of younger females and those with atopic conditions.

Today marks the first global awareness day for those suffering with this condition. However, the diagnosis itself still provokes controversy among healthcare professionals. To some, it evokes an emotive response – ‘functional’, ‘psychological’ or ‘somatisation’ – for others it is ‘debilitating’, ‘life-changing’ or ‘catastrophic’.

This juxtaposition of opinion, for the same condition, is held for very few conditions. Fibromyalgia, irritable bowel syndrome, functional neurological disorders, similarly create controversy. Hypothyroidism, type 2 diabetes, multiple sclerosis and polymyalgia rheumatica, however, do not face the same stigma despite their initial presentation similarly having non-specific symptoms.

The difference: investigations, tests and results."

https://www.bma.org.uk/news-and-opinion/known-unknowns-and-as-yet-medically-unexplained-diseases

 

[chrisb]

How does he get a date of 1984? Is it something to do with Orwell?

 

[NelliePledge]

Apart from the date I think this is a pretty good article

ETA and while the date might be a big issue for some in the community for me the ‘exact’ date isn’t something the GPs need to take on board the non psychosomatic message

 

[MEMarge]

How does he get a date of 1984? Is it something to do with Orwell?

Is it around the time that CDC used CFS in the USA afterv the Lake Tahoe out break?

 

[chrisb]

Is it around the time that CDC used CFS in the USA afterv the Lake Tahoe out break?

I suppose someone may have started using the term before the meeting in spring 1987 ,at which the preliminaries were discussed and agreed, and there was then about a year of back and forth agreeing the definition for the paper which was published in about March 1988. So that seems unlikely. I can't think of anything relating to ME or PVFS happening in 1984 . I would not want to make too much of this, but it does give a a slightly unfortunate impression.

 

[JemPD]

When a patient presents with a condition that we cannot explain, the problem is ours, not theirs.

 

[Jonathan Edwards]

I can't think of anything relating to ME or PVFS happening in 1984 .

In a review in 1991 Peterson dates the outbreaks that led to the CFS term from 1984 so maybe Strain has just misremembered the date of the christening.

 

[chrisb]

That seems like a reasonable explanation, but I am not sure why one would rely on the Tahoe date as the commencing date for a definition of ME. It cannot even be that nothing happens in the world until it has happened in America. One of the first sets of cases described as ME was in Alaska in about 1956- though I am a bit hazy as to the exact date.

 

[rvallee]

a preponderance of younger females and those with atopic conditions

Interesting. First I've seen outside of Gez's survey that as far as I can tell was the first to show this.

Although the opening with 1984 for ME does not inspire confidence in the paper overall. I guess it's the UK-centric that does it here. Well, so does this:

Today marks the first global awareness day for those suffering with this condition

It is the.... 5th, I think?

Hypothyroidism, type 2 diabetes, multiple sclerosis and polymyalgia rheumatica, however, do not face the same stigma despite their initial presentation similarly having non-specific symptoms

This is a rare admission. Tons of diseases have the exact same features as ME, especially non-specific symptoms. It's all about tests. While our BPS overlords are all about not testing, which is how we got to here.

Still many details wrong but it signifies a slow shift in thinking. It's definitely on brand with how ME has been mishandled to get things wrong right along getting some things right.

 

[Jonathan Edwards]

It affects around 250,000 people in the UK, with a preponderance of younger females and those with atopic conditions.

I would be interested to know where the atopy bit comes from.

I looked up atopy and as I expected found this:
Asthma, allergic rhinitis, and atopic dermatitis are almost invariably accompanied by elevated levels of IgE.

If that is true someone should have found elevated levels of IgE associated with ME/CFS, even if only on an average basis or in a greater proportion than normal controls. Lots of studies have looked at basic immunological measures like this and as far as I know there is no link to IgE level s in ME/CFS. If there is I have missed it.

It would be good to get this clear, because the atopy link is often banded about and if it were true it would have major implications for the way one ought to view mechanisms.

 

[rvallee]

What's amazing about this basic statement is that every profession respects it. That's what being a professional is all about. In software development, it's the equivalent of "it works on my machine". Only junior developers make that mistake, because they either grow out of it quickly or get kicked out of the profession in the form of never being employed again.

And yet it is truly a revolutionary statement in medicine, radical even. Then again, no other profession keeps mythical baggage from the 19th century around, which may, just may, explain this a tiny bit.

 

[Lou B Lou]

"Where, then, do we place conditions diseases that we don’t as yet have diagnostic tests for?"


NHS Page for Parkinson's Disease (I assume the Parkinson's Disease NHS Page is more accurate than the NHS page for ME):

'No tests can conclusively show that you have Parkinson's disease. Your doctor will base a diagnosis on your symptoms, medical history and a detailed physical examination.'


'A diagnosis of Parkinson's disease is likely if you have at least 2 of the 3 following symptoms:

• shaking or tremor in a part of your body that usually only occurs at rest
• slowness of movement (bradykinesia)
• muscle stiffness (rigidity)'
  
  'If your symptoms improve after taking a medication called levodopa, it's more likely you have Parkinson's disease.'
  
  
  
  So, no test for Parkinson's Disease. But Parkinson's patients are not hung out to dry or put in the special category of disbelief because there is as yet no test.

 

[hibiscuswahine]

I would be interested to know where the atopy bit comes from.

I looked up atopy and as I expected found this:
Asthma, allergic rhinitis, and atopic dermatitis are almost invariably accompanied by elevated levels of IgE.

If that is true someone should have found elevated levels of IgE associated with ME/CFS, even if only on an average basis or in a greater proportion than normal controls. Lots of studies have looked at basic immunological measures like this and as far as I know there is no link to IgE level s in ME/CFS. If there is I have missed it.

It would be good to get this clear, because the atopy link is often banded about and if it were true it would have major implications for the way one ought to view mechanisms.

I was surprised to see this too, as my understanding of atopy is quite specific to allergy though much debate about MCA. His comments might be based on this study, nevertheless, it clearly states the mechanism is unknown.

https://journals.lww.com/md-journal...ased_Risk_of_Chronic_Fatigue_Syndrome.36.aspx

 

[DokaGirl]

Is it around the time that CDC used CFS in the USA afterv the Lake Tahoe out break?

I think that's likely.

 

[DokaGirl]

How does he get a date of 1984? Is it something to do with Orwell?

The Incline Village outbreak started in 1984:

https://me-pedia.org/wiki/1984_Incl... 1984, there was an,north shore of Lake Tahoe

 

[SNT Gatchaman]

Looking at the LC experience of atopy and the potential role of mast cells:

Atopy is predictive of a decreased need for hospitalization for coronavirus disease (2019), which potentially relates to the published observation of three different immune response types, where one end of the spectrum has severe acute disease and the other mild or even asymptomatic disease, but increased risk of LC.

In Could SARS-CoV-2 Spike Protein Be Responsible for Long-COVID Syndrome? is the paragraph:

Interestingly, symptoms experienced by long-COVID patients, especially cognitive dysfunction, are similar to those present in patients with mast cell activation syndrome (MCAS), in whom mast cells can be stimulated by environmental and stress triggers, including viruses such as SARS-CoV-2. Mast cells are located perivascularly in close proximity to neurons, especially in the hypothalamus, where functional mast cell-neuron interactions have been documented. Mast cells also interact with microglia leading to their activation and neuro-inflammation.

Which relates to the recent ME paper on the role of microglia, as the innate immune cell of the CNS. See The Pathobiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Case for Neuroglial Failure

See also Long-COVID following mild SARS CoV-2 infection: characteristic T cell alterations and response to antihistamines. Abstract contains:

Long COVID [...] often follows a mild acute illness. Anecdotal reports of gradual clinical responses to histamine receptor antagonists (HRAs) suggest a histamine-dependent mechanism that is distinct from anaphylaxis, possibly mediated by T cells, which are also regulated by histamine.

 

[Sean]

Good article.

"It’s the first global awareness day for ME..."

First?

 

[Hutan]

So, no test for Parkinson's Disease. But Parkinson's patients are not hung out to dry or put in the special category of disbelief because there is as yet no test.

Yes, it's an interesting question, as to why the different treatment. Yes, there's a visible shaking, but plenty of people with tremors, twitches and funny walks are labelled with Functional Motor Disorder.

I think it may have a lot to do with these two characteristics of Parkinsons:

One clear risk is age: Although most people with Parkinson's first develop the disease after age 60, about 5% to 10% experience onset before the age of 50. Early-onset forms of Parkinson's are often, but not always, inherited, and some forms have been linked to specific gene mutations.

More men than women are diagnosed with PD by a ratio of approximately 2:1

People developing Parkinsons close to retirement age aren't a threat to the health insurance industry - by the time their illness becomes really debilitating, they wouldn't be working anyway. And older men don't fit the stereotype of the MUS patient.

 

[chrisb]

The Incline Village outbreak started in 1984:

I know that ,but they did not come up with a case definition until 1987 or 88 and there is no reason for a UK based doctor to believe that Tahoe was of any greater significance than other outbreaks. There are even those who think the epidemic outbreaks are not entirely relevant anyway. That is debateable. Making nature conform to human concepts is a tricky business.

 

[alex3619]

One of the first sets of cases described as ME was in Alaska in about 1956- though I am a bit hazy as to the exact date.

If the 1930s US outbreaks were ME then the first recorded cases were 1932, and a big outbreak in 1934, both at and around a hospital in California (LA County Hospital?). There was a really good early description of this in a government report written several years later, maybe 1937 or so.