(CDC) Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), 2023

[bobbler]

Just to add in response to @Jonathan Edwards. You talk of ME/CFS being a subcategory within chronic fatigue. Why? Why not a subcategory within chronic pain, or within exertion intolerance, or within orthostatic intolerance?
I think it makes no more sense including pwME as a subcategory in any one of these umbrella groups than any other. Nor should ME/CFS researchers think it's OK to lump ME/CFS in with other subgroups in any of these groups.

To put ot bluntly, why is research ME/CFS mixed together with idiopathic chronic fatigue any more acceptable than choosing a patient cohort from a mixture of POTS and ME/Cfs, or a mixture of heart failure with ME/CFS, or a mixture of people with unrefreshing sleep with people with ME/CFS?

Edit to add. By acceptable, I mean scientifically valid.

1000% agree. I’m in a sticky wicket until it’s finally left me debilitated severe I assumed I had something else - the description of ‘CFS’ genuinely did not fit. It’s was only the 2017 CDC pathophysiology that made me pause after a decade of working out what I actually have on my to do list (hard because I didn’t have many shots to ask for without risking being consigned to hypochondria forever thanks to I suspect unkind notes from past medics based on nothing right about me).

fatigue was not something in 20yrs someone would have described me as. It was extremes:normal and more ill and out of it than could be imagined something obviously very wrong according to what I lived. No one who went thru what I did should ever have had what I did re the ‘behavioural nonsense’ but people can’t see past being bigots no matter how much they destroy that person in the process refusing to belief their eyes of their bigotry not fixing people. People could enforce it and still not believe the consequences and outcomes of their actions weren't 'secretly my doing'

I never related to others with the condition because I was never slow or ‘fatigued’ I was ill, collapsed, performing despite horrendous body want do what I need it to and makes that impossible but cover it with a smile and people think they’ve been so kind giving you leeway with a sneer of you being pathetic. In hindsight it is so obvious because if anyone could stand back from all that and use empathy and big-picture you can almost see the shrinking envelope and the resulting how it comes unstuck at the edges in certain ways (suddenly sleep through something, can't move, become unreliable on 'the small stuff' like timings most importantly if people start looking at the person and if they are really functioning and OK rather than their output) despite people fighting to gain control over their body doing what they are used to it doing.

It’s why it’s so weird to get the bigoted fatigue now as people rewrite every line of me and my history of who I am and every exchange to their wanting to think bigoted because it works for them - utter exhaustion yes. But in ways people never ever got or were ok with.

CFS is an illness where someone walks in and becomes an object in the world no truth exists for them, nothing they do is acknowledged they certainly should expect no words to be heard they have no right. The book of all the nasty vile personality lies based on ‘pretend research’ that’s as research based as a manifesto is now who they are to anyone and they have to shut up and pretend that’s the case.

We are made as humans to fit the nonsense description of an illness that doesn’t exist or be bullied and ignored AND called deluded to boot if we correct it. Our rights to even be like normal patients disappeared when anyone muttered any term in that area - I never got to say ‘this is my symptoms’ you get told them by anyone who isn’t a rare biomedical doctor or the odd individual who reads.

So the clinical need is that: the reason it doesn’t exist is because we’ve - as human beings - been whitewashed from existence re: records being accurate to what we suffer. Without our symptoms being written down no one will let us speak or exist. Small or big picture doesn't know what it is working with. Medical things/clues are written of as 'symptoms' to fix ie behavioural in the mind of too many that are seen as cart before horse

more the question is: does ‘chronic fatigue’ exist as more than a blobby entity that isn’t clinical and represents people who haven't been investigated properly?

 

[bobbler]

If the name had been changed to Systemic Exertion intolerance Disease, would anyone get away with researching SEID in mixed cohorts with idiopathic chronic fatigue?

Or looking to long-covid and all their pasc and variations mixing in those who were hospitalised etc would it not have underlined and extracted a specific issue that could have been usefully managed and treated - whatever those who had something else might have had (and have been pulling in the opposite direction on research outcomes etc)

Clinically the fact that this lot haven't researched 'chronic fatigue' well either as far as I'm aware and yet PEM/PESE has robust findings from smaller samples that a body of research can expand from. Which specifically shows that management is at least in one fundamental, all-encompassing way, the exact opposite of what the profession proposes for fatigue currently.

But I think the very reason that those with ME had the mick taken out of them was - as Wessely quotes himself much - the fact that 'we are Schrodinger's cat of both can and can't do x' depending on how much someone cares to look at it. Except it isn't like that at all because if we use adrenaline to do something out of survival even when debilitated it obviously finishes us off further. But that pretence of malingering based on 'PEM', the fascination with whether you could throw someone into a pool and they'd become unparalysed 'meaning something', the 'if they only behaved like everyone else and went to bed earlier' to me denotes that they knew they were implementing something at people with PEM whilst claiming fatigue knowing they were very different.


Anyway the workwell science pretty much shows his anecdotes in scientific action - it is 'just' missing witnessing the effects in suffering (I detest the word 'behaviour' given the inference of petulance or self-discipline etc) over the days, weeks, months after. And that's a heck of a lot - and I worry that perhaps without studying 'live PEM' and working out if there are types then no wonder the only treatment we end up getting is 'avoid PEM'. I don't know whether you have conditions with remissions and flares that if you studied the biomed stuff outside of those you see something very different too?

Anyway I digress, I think that the issue is why should we carry the can for the issue with 'fatigue' which seems a bit of a nonsense concept clinically other than a milieu

I found the following paper which I like as it has some historical,is somewhat multidisciplinary and it is at least refreshing to see the elephant in the room brought up: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6139359/

In the clinical field, ranging from oncology to sleep medicine, neurology, and probably most importantly general practice, practitioners consider the lack of a clear conceptualisation of fatigue for diagnostic and treatment purposes to be a major clinical issue (e.g., Guilleminault and Brooks, 2001; Neu et al., 2010a

and for the context of this very conversation, I much appreciate them resurrecting the follow rule to live by idiom:

However, to avoid one-eyed kings being partial experts in the land of the blind, we currently advocate a common denominator across areas of expertise for the investigation of fatigue.

However, am I the only one that wonders whether the conclusion after this phrase is the opposite of what it should be?

Are both of these things not true with the current situation?

EDIT:
Currently an even bigger issue is the fatigue paradigm means people likely might have 'some sort of PEM' residually or ready to burst in 24hrs (from having journeyed to a trial) but most trials talked of don't really look at the comparison of before and after 'in and out'. Something gets triggered because it feels very cyclical once you have any space at all or just have it long enough doing enough 'big things'. Fatigue is never studied as if something 'goes wrong', often it hardly touches on something 'being wrong' other than how the car is being driven.

Even with pain you get stabbing, shooting, burning etc asked about and it is genuinely used as a diagnostic asking about when and how as it is a clue something is a cause rather than, I hope still, a pathway dumped into.

Probably the bigger question is 'what are pathways, why do they exist and are they really valid or creating the problem?'. Fatigue, chronic fatigue or whatever needs a big red flag for existing as it currently does as one. Whether you'd dump ME/CFS even under an ideal imaginary one feels like a bonkers Q given one is at least defined for research and I'm unsure the other should be treated as a 'generic' rather than individual outcome of e.g. cancer or something else that might benefit from more medical help if it were tailored to the specific individual's circumstance. Who knows how many are left in the bucket if that were happening and what 'type', ergo who could help that?

 

[rvallee]

When it comes to pain it is perfectly acceptable to recruit people with different reasons for pain. It is the norm. Because most of the treatments act on generic pain pathways. There may well be treatments that act of generic pathways relevant both to ME and unexplained fatigue without PEM.

Great reason not the repeat a known mistake. Things are just awful in everything pain, the only difference is when the exact cause is known and can be treated, generic pain guidelines are now the same as us: BS, BS and yoga-based BS.

 

[Mithriel]

I find this sort of discussion frustrating.

Before the CDC invented CFS ME was a recognised entity where the main characteristic, by observation and self report, was an abnormal response to exercise. This varied in that not everyone got every symptoms but it involved swollen lymph glands, a flu like feeling and so on. People noticed that they could feel fine but collapse up to 3 days after unusual exertion.

Some people felt fatigue, but only in the way it is experienced in MS. It is there for most people at least some of the time and may be the hardest thing to cope with but does not feel like the core of the illness more a consequence of being chronically ill.

Suddenly fatigue was what our disease was and nothing else was considered. Of course it would seem as if CFS was just one end of a spectrum if the symptoms that distinguished it were ignored.

So now we have to try to argue that ME is a distinct thing when it was until researchers interfered and caused confusion for their own gain.

Now they have got it into medical consciousness as being about fatigue when it never was.

 

[JemPD]

I find this sort of discussion frustrating.

Before the CDC invented CFS ME was a recognised entity where the main characteristic, by observation and self report, was an abnormal response to exercise. This varied in that not everyone got every symptoms but it involved swollen lymph glands, a flu like feeling and so on. People noticed that they could feel fine but collapse up to 3 days after unusual exertion.

Some people felt fatigue, but only in the way it is experienced in MS. It is there for most people at least some of the time and may be the hardest thing to cope with but does not feel like the core of the illness more a consequence of being chronically ill.

Suddenly fatigue was what our disease was and nothing else was considered. Of course it would seem as if CFS was just one end of a spectrum if the symptoms that distinguished it were ignored.

So now we have to try to argue that ME is a distinct thing when it was until researchers interfered and caused confusion for their own gain.

Now they have got it into medical consciousness as being about fatigue when it never was.

THIS.

 

[bobbler]

I find this sort of discussion frustrating.

Before the CDC invented CFS ME was a recognised entity where the main characteristic, by observation and self report, was an abnormal response to exercise. This varied in that not everyone got every symptoms but it involved swollen lymph glands, a flu like feeling and so on. People noticed that they could feel fine but collapse up to 3 days after unusual exertion.

Some people felt fatigue, but only in the way it is experienced in MS. It is there for most people at least some of the time and may be the hardest thing to cope with but does not feel like the core of the illness more a consequence of being chronically ill.

Suddenly fatigue was what our disease was and nothing else was considered. Of course it would seem as if CFS was just one end of a spectrum if the symptoms that distinguished it were ignored.

So now we have to try to argue that ME is a distinct thing when it was until researchers interfered and caused confusion for their own gain.

Now they have got it into medical consciousness as being about fatigue when it never was.

Stupid isn't it that they are still trying to sell this as right.

Imagine dyslexia as an example. And someone suggesting the main 'symptom' (rather than outcome) is not being able to read sufficiently. Then setting up a generic reading clinic based on the rules, from old days before dyslexia was understood, of behaviourally getting someone to learn to read.

Pretending that continually hammering away at that is 'help' rather than.. I'll get pulled up if I use the correct word for it, but it did a lot of harm for the generation before dyslexia was discovered to be stuck in school assumed to be lazy, or stupid or not bothering enough and all the grim bigotry that was left open to

Sadly I think all that this highlights is the silly days of allowing generic lump and dump pathways to be set up and chucked under certain types of people - or maybe not all, just left open for some to be - doesn't operate well with the system that doesn't have oversight keeping from a situation where the research done is what those who are in the job want to cover ie not a strategy of what works for the conditions.

We could get extreme and say why not throw everyone who breaks anything into a pain clinic to 'treat their pain' without looking at whether they have a serious leg fracture vs appendicitis given what said specialists would be qualified in. But I'm not sure how far off we really are from that currently?

 

[DigitalDrifter]

if a person has chronic fatigue and other symptoms with no identified cause, regards of whether they fit an ME/CFS diagnostic criteria, the clinical management is going to be pretty much the same - supportive respectful care

Patients who experience Consequential Progression needed to be prioritized in order to prevent deterioration of their condition. I desperately needed appropriate housing and social care but was denied it and am now very severe as a result. So no, I don't think the management is the same.

I didn't have the level of ME fatigue until many years

Sorry to hear of your deterioration, did you experience natural progression or Consequential Progression?

There may well be treatments that act of generic pathways relevant both to ME and unexplained fatigue without PEM.

True, but I find it very unlikely. You also have to factor the deterioration caused by conflating ME with plain fatigue, the treatment might make you 20% better but the harm caused by mismanagement and lack of consideration is far greater, at least it was in my case.

the 'if they only behaved like everyone else and went to bed earlier' to me denotes that they knew they were implementing something at people with PEM whilst claiming fatigue knowing they were very different.

Quantum Medicine

 

[Simone]

So much about this is frustrating. We knew it was coming, but still frustrating. But what I’m finding infuriating is how much the PACE trial is included in this analysis. It’s everywhere throughout the GET section. In some subsections (pain and 6MWT) PACE is the only source of evidence mentioned. If Horton had done the decent thing and retracted the paper, we’d be in such a better position. In the recovery section, the authors do note the reanalysis of the PACE data, but still present the data from the original paper as though they’re equally valid.

Graded exercise was associated with increased likelihood of improvement in fatigue, improvement in function, and recovery versus inactive controls, based on the modified or original PACE trial definitions for these outcomes; however, the definition for recovery did not exclude patients with persistent symptoms (low strength of evidence). [emphasis added]

In what world can persistent symptoms be considered recovery? The authors seem to think that just noting this is enough. It isn’t. They needed to clearly articulate that studies like PACE conflate recovery with improvement (though they don’t even measure improvement well). Really shows how much influence something can have once published.

 

[ME/CFS Skeptic]

It doesn't seem like they took the feedback/comments into account in the final report. I don't see any important changes. Has anyone spotted some?

I don't think any of the comments we made (overview here) were taken into account or addressed, for example that they did not consider objective outcomes or reports of harms in the report.

They did publish a response to public comments but they seem to have extracted comments and arguments as they like, often the most emotional, to make their case. They argue for example that the PACE changes to the protocol made no important difference and that downgrading one level for lack of blinding is sufficient. The most annoying response was about reports of harms. They write:

"Theme #4: Exclusion of non-RCT Studies on Harms Evidence Commenters suggest that the EPC missed potentially relevant evidence on harms by excluding observational studies and patient surveys. We focused on randomized controlled trials for evaluation of benefits and harms of treatments because observational studies and non-RCTs are susceptible to bias and confounding, particularly for more subjective outcomes like those evaluated in this report."​

I don't think the report even mentions that ME/CFS patients have consistently reported harms from GET.

Anyway, I hope the CDC will contract another research team to evaluate ME/CFS studies in the future. This group seems to use a checkbox methodology, where they only extract data and rate things as their handbook says without thinking for themselves or trying to understood what happened in the trials.

 

[Sean]

Graded exercise was associated with increased likelihood of improvement in fatigue, improvement in function, and recovery versus inactive controls, based on the modified or original PACE trial definitions for these outcomes

That is just flat out wrong.

Even the effect from the more GET favourable post-hoc modified definition was null at long-term follow-up.

I cannot believe this is just mere incompetence or ignorance at this stage. There are no possible excuses for it.

 

[duncan]

CDC really is more advertising agency than medical research entity, right? The NIH is the research arm, or at least what passes as research.

 

[RedFox]

Yes, generally.

 

[Sean]

CDC really is more advertising agency than medical research entity, right?

So can we sue them for false advertising?