ME: The Fatigue Cover up - Greg Crowhurst

[Sly Saint]

From FB:
"
Greg Crowhurst
21 August at 08:03 ·

ME: THE FATIGUE COVER UP

Further to my question here on Facebook, "What is ME", I have now compiled the responses into this brand new publication, which tries to show just how desperately ill people really are.

It is a very powerful document indeed.

This is extremely relevant in light of the new NICE Guidelines to be developed.

Thank you to everyone for all your help and input, it is hugely appreciated ! I have dedicated the publication to you.

(I have kept all the responses confidential and I have asked for permission to post, please DO NOT HESITATE to contact me if you would prefer your response to be removed.)"

from the article:
"
Recently I asked on Social Media:
WHAT IS ME?
This is not as simple as it sounds. On Stonebird we are passionately committed to using the
term Myalgic Encephalomyelitis or ME, however, the name, its system dysfunction and the
symptoms that arise from having ME have all become confused, misrepresented and
misinterpreted under the umbrella terms CFS/ME,/ ME/CFS, CFS and CF."

http://stonebird.co.uk/FC.pdf

 

[arewenearlythereyet]

I got to page 5 and found so many “conjecture facts” that it turned me right off. Sorry...this seems to be happening a lot at the moment in ME advocacy ...perhaps it is the misinformed fake news thing being so popular.

I think this style of advocacy is more unhelpful than helpful since it feeds into the hysteria/anti-science narrative

I can’t be bothered to read the rest to see if it gets any better.

 

[Peter T]

It is good that you [Greg Crowhurst] have put so much work in to providing this beginning of a 'natural history' of ME. Science should be both Popperian, testing hypotheses, and observational in the sense of the Victorian descriptive natural histories. Unfortunately for the BPS brigade here in the UK they have jumped straight into hypothesis testing, not even doing that very well, and not bothered to seriously ask if their theories even begin to describe the reality of the patient experience.

As you stress this is a particularly important exercise given the confusions and inadequacies of the various current research and clinical definitions and the confusion or even deliberate obfuscation on the part of so many clinicians and researchers particularly here in the UK, most especially the BPS advocates, between the symptom of chronic fatigue and the condition chronic fatigue syndrome or more properly ME.

Your identification and emphasis that fatigue is not the primary symptom is really valuable and indeed for some in some stages of their condition, if well managed, fatigue may not even be a significant factor. Calling ME chronic fatigue syndrome may prove to be as irrational and as unhelpful as describing a brain tumour as chronic headache syndrome.

I found your collation of people's symptoms/experiences particularly important, but like @arewenearlythereyet I was a little uncomfortable with the first five pages or so, finding it hard not to get distracted by wanting to argue with some wording or wanting to question some points asking if we have the evidence to say that so emphatically yet.

I will when rested come back to this to see if I can respond more constructively, as I do feel you are undertaking a very valuable exercise that we should all support as much as possible and that this is an exercise that s4me is ideally placed to encourage and develop. So many of us have years if not decades of attempting objective observation of our own or family members symptoms and trying to develop the terms to describe these symptoms.

[ Added: sorry @Sly Saint , I have just realised that this is not your document, but that you were rather providing a link to work by someone else. The penalty of responding when not properly rested.]

 

[Trish]

I always appreciate it when people in our community put a lot of effort into producing documents that can be useful in advocacy, and I do in this case too. But... they have to be accurate.

I have had a look at the first 5 pages. I agree there are huge problems with most of this.

For example, under the list 'symptoms' we have faulty mitochondria, heart defects, muscle abnormalities, to name just three.

Any doctor will tell none of these come under the definition 'symptom':

Medical Definition of Symptom: Any subjective evidence of disease. In contrast, a sign is objective. Blood coming out a nostril is a sign; it is apparent to the patient, physician, and others. Anxiety, low back pain, and fatigue are all symptoms; only the patient can perceive them.

But, more seriously, we have no evidence that these structural defects are present in all, or ever most, ME patients.

And on page 5:

Broadly speaking we suggest that there are at least three categories of “ME”, here in the UK:
● The ME group who say that ME is Enteroviral.
● The ME/CFS group who say ME encompasses a wide range of illnesses with the common denominator of fatigue, triggered by infectious agents or a toxic environment.
● The CFS/ME group who say that ME is a psychiatric, somatoform disorder. This powerful group, unfortunately is still the dominant influencer.

To me the first two are just plain wrong.
I think most people on this forum would use either the term ME or ME/CFS and would say the cardinal symptom is PEM, not fatigue. And most of us would not attribute the 'cause' to a particular infectious agent.

I'll have a look at the rest, but I'm sorry to say that if this document is to be taken seriously and used widely, the first 5 pages need a complete re-write.

 

[Trish]

OK, so I have had a look at the rest. Again, I really appreciate the effort that has gone into this, and the emphasis that ME or ME/CFS or whatever we call it is not just fatigue is important. It is good to collate patients' experiences of symptoms, to give a clearer idea of the range and severity of what people experience.

I am concerned that the suggestion seems to be that true ME is only the type described by Ramsay from the Royal Free Outbreak, with presumed enteroviral trigger, and the suggestion that Chia is the only one doing good research. Have I misunderstood this?

 

[Peter T]

For example, under the list 'symptoms' we have faulty mitochondria, heart defects, muscle abnormalities, to name just three.

This is

For example, under the list 'symptoms' we have faulty mitochondria, heart defects, muscle abnormalities, to name just three.

Any doctor will tell none of these come under the definition 'symptom':

We have a growing list of potential 'defects' in ME and a growing list of subjective experiences, which as of yet we can not unambiguously connect. For example with a brain tumour we may be in a position to say that certain headaches are directly related to the effects of the tumour, but as @Trish says with such as mitochondrial annomolies we do not yet know if they are present in all with ME or what if any the subjective correlate might be.

Our language to describe the subjective experience may be influenced by the presumed underlying deficit, and in turn may influence how we investigate those deficits. I am increasingly reluctant to use the term fatigue or even tiredness in describing my symptoms, as I increasingly want to educate people that PEM is the primary symptom not fatigue, this in part is based on my belief in an underlying physiological mechanism. However, also the term PEM, even with its problems, has I feel enabled me to more accurately describe the fluctuations in my symptoms.

As my condition has worsened, I am more aware of a subjective feeling that I struggle to describe. It is distinct to tiredness, to pain or even generalised fluey sensation. It is a sort of inertia or emptiness in the whole body though most consciously in the limbs. I am tempted to think it is the subjective experience of the experimentally identified mitochondrial anomalies but this is currently purely speculation.

Sorry if I am waffling, but my point is that collecting a symptomology of ME is something of a boot strap operation, and ultimately the exercise of doing it will in turn influence how people perceive and describe their symptoms.

Greg Crowhurst's exercise in collecting people's descriptions/experiences of their condition is so important, but how they are presented impacts on how useful the exercise is. I agree the current 'introduction' to this document is problematic and will for many distract from what is a first step to a listing and preliminary classification of our symptoms.

 

[arewenearlythereyet]

I should also really say that I’m not having a go at anyone in particular and I realise that putting any level of work into somethimg like this is a bigger investment for folk like us. The way I read it this piece was an amalgam of many peoples thoughts coordinated by the author.

Having been in a similar position myself (trying to agree a name for an online forum ) this can be like hearding cats to get consensus ...and throwaway comments can sometimes get as much weighting as those more considered. Perhaps this is what has happened here?

Either way though I do find the “one true infectious/sudden onset ME” a little too religious zealot-like and a complete turnoff. That’s fine if that’s your belief system, but it doesn’t really work well with the advocacy efforts elsewhere arguing with science and facts...in fact it completely undermines it, which I’m sure was not the intention.

 

[Sisyphus]

I don’t know why, but it seems that any advocacy that had its birth in social media or involve a hastag turn out to be shallow and a disservice to the people he claims to help.
I am not saying that this is the case here, I have not even read the page. I have seen this with another hashtag campaign related to us.

 

[Mithriel]

“one true infectious/sudden onset ME”

I am sorry you find it a turn off, but for those of us ill since before the invention of CFS it is what ME actually is - a disease of infectious onset, often trivial or subclinical, which can occur in outbreaks. We had it then and those of us who've survived still have it. I doubt if it has disappeared.

It may be only one class of a particular type of illness but it deserves as much respect as any other.

Since the CDC and US took it over in the 80s it has been continually sideline but it exists. I am not saying other diseases or manifestations of disease are less worthy of research and treatments, but we should not be ignored and it as founded in science and facts as anything else even if the name has been claimed by others and widened.

 

[Trish]

@Mithriel , I've never seen anyone denying that infectious onset is a very common picture with ME, and that when ME was first named it was described as having an infectious onset. I hope you don't feel anyone is denying your diagnosis.

However, some people with ME symptoms do not appear to have a clearly identifiable single infection that triggered it. I don't think this pattern of illness should preclude them being diagnosed with ME too if the symptom pattern fits in every other way.

 

[arewenearlythereyet]

@Mithriel i respect and accept that there are a large number of PWME that have your diagnosis of infectious onset, but as a recent poll revealed there are between 25-50% of us that don’t have this onset yet have the same symptoms.

Its the lack of facts or scientific proof for the claims made in this piece that’s the turn off. I mainly don’t like poor science and counterproductive advocacy because it makes us look foolish as a community and sometimes unreasonable and irrational ...these are not good starting places to win our argument for better research and treatment of pwme.

 

[lansbergen]

I am sorry you find it a turn off, but for those of us ill since before the invention of CFS it is what ME actually is - a disease of infectious onset, often trivial or subclinical, which can occur in outbreaks.

The subclinical can make people miss it and then later blame something else.

 

[adambeyoncelowe]

The subclinical can make people miss it and then later blame something else.

But that's an idea that can't be disproved, and therefore unscientific. Everybody has markers of all kinds of disease in their body, healthy or otherwise, so if you can't prove an infectious onset, it's a meaningless distinction.

Assuming anyone without proof of infection must have had an occult infection is circular reasoning. You were always going to assume that everyone had an infection, regardless of the evidence either way.

It's equally possible that patients have recall bias. Everyone gets viruses throughout their lives, so it's easy enough to attribute the cause to any one of those. Because it's almost expected, patients look for evidence that confirms that bias.

I'm saying this as someone who thinks they had an infectious, sudden onset. If evidence reveals it's a metabolic trap, an autoimmune disorder or a brainstem signalling problem, I'm not going to be upset either way. But being dead-set on causation and aetiology without proof is exactly what the BPS lot do.

 

[Mithriel]

There is already proof of infectious onset. ME was the name given to a disease that came in epidemics, outbreaks and clusters. Even CFS was invented because of an outbreak among many people at once who all appeared to have an infection. This is the exact opposite of thoughts being able to bring on disease unless you believe in mass hysteria.

Now the consequence of that infection may be to trigger an autoimmune process or dauer or whatever in someone so that the end result is something similar to ME so it should have the same name is another question.

Subclinical and trivial infections becoming chronic life changing diseases is not an unscientific idea. A lot of what we think of as an infection is the response of the immune system so a microbe that gets far enough into the body to cause chronic disease may do so because there is only a trivial illness at infection.

VD clinics employed contact tracers because things like syphilis and gonorrhoea were so mild at the beginning. Chlamydia causes havoc in the body because women do not know they have it. TB lies dormant for years. HIV does not cause any noticeable disease for a long time.

 

[arewenearlythereyet]

There is already proof of infectious onset. ME was the name given to a disease that came in epidemics, outbreaks and clusters. Even CFS was invented because of an outbreak among many people at once who all appeared to have an infection. This is the exact opposite of thoughts being able to bring on disease unless you believe in mass hysteria.

Now the consequence of that infection may be to trigger an autoimmune process or dauer or whatever in someone so that the end result is something similar to ME so it should have the same name is another question.

Subclinical and trivial infections becoming chronic life changing diseases is not an unscientific idea. A lot of what we think of as an infection is the response of the immune system so a microbe that gets far enough into the body to cause chronic disease may do so because there is only a trivial illness at infection.

VD clinics employed contact tracers because things like syphilis and gonorrhoea were so mild at the beginning. Chlamydia causes havoc in the body because women do not know they have it. TB lies dormant for years. HIV does not cause any noticeable disease for a long time.

That’s fine as a theory but there is no proof to what you say to separate people with ME in this way ? This is the same problem I have with the piece above.

Before people are reclassified into subsets with different names etc there needs to be more than just theory, this needs to be proved via research.

Speculative theory being dressed up as fact is exactly what the bps lot do. Jump ahead to the preconceived end game without evidence or facts....just say it in a persuasive way.

What I find frustrating with some ME advocates is the hypocrisy which completely undermines the good stuff they are trying to do.

It would be far better to use the facts we have and to focus on the lack of facts in our advocacy efforts than to make stuff up.

It seems though that some people are getting a little carried away and grasping at straws.

 

[Mithriel]

I have no idea what you mean. I am not being hypocritical or grasping at straws. Some things exist, what people do with those facts is another matter. A lot of people got ill with a disease (on many occasions), doctors examined those patients and decided they all had a new disease which they called ME in the same way doctors had been examining patients for years and deciding they had cholera or typhoid or flu or measles.

There is solid scientific precedent that patient do not always recognise when they have an infection until it leads to chronic damage (TB, chlamydia and lots of others)

Polio was a trivial infection in most people and it is possible that ME is an abnormal reaction to a common illness. Many infections suddenly flare up as much more damaging then go back and not everyone in the epidemics developed lifelong ME.

This has no comparison with what the BPSers do. It is not a speculation or a belief it is a historical fact.

Modern research looking at what is actually happening in patients is relevant and useful. I live in hope of a treatment. Subgroups, if they exist, will be sorted through more research.

But denying the past is what SW did. His website said that neurasthenia had been common in Victorian times but it had disappeared for most of the 20th century only reappearing as CFS. He wrote the epidemics ot of history. I don't see why we should.