The P2P Draft report is out

[GalaxiiGrl]

I feel some people are so hurt by the abuse they have suffered that they just want blood, and nothing else will do.

I don't have any interest in blood. I just want to feel well after 22 years of being ill.

I am hurt by the abuse we have suffered by HHS. I don't think it's unusual or unreasonable for a victim of abuse to lose all trust in his/her abuser's recurrent yet unmet promises to reform.

 

[Wildcat]

@snowathlete wrote: "I feel some people are so hurt by the abuse they have suffered that they just want blood, and nothing else will do. But what purpose does this ultimately serve - does it get us where we need to be?"

How patronising and insulting. More to the point is that we have seen reports come and go, and have learned to 'read' them. Is it really believable that a committee of non experts trying to assess a large amount of evidence in a hurry could, with the best will in the world, be as clear minded and far sighted as you claim? And if they are, why the need for more time spent on CBT/GET, with the additional diversions of homeopathy and the newly introduced multimodal therapy?
.

 

[snowathlete]

With or without cheese and a tomato?

Such a question should be simple to answer, and yet I feel the weight of attached political implications...I suggest a plate of cheese and another of tomato so those with intolerances can avoid that which is disagreeable to them!

 

[Ember]

The Evidence Review acknowledges that CFS, ME and ME/CFS may “identify separate groups entirely,” and the Draft Report suggests that lumping together more than one disease (“e.g., Is ME/CFS one disease?”) may have resulted in inconsistent findings and/or research gaps. So why does the Panel insist “that the ME/CFS community agree on a single case definition (even if it is not perfect)?” Why must a single case definition be used to study more than one disease or patient population?

Mulla had lost his ring in the living room. He searched for it for a while, but since he could not find it, he went out into the yard and began to look there. His wife, who saw what he was doing, asked: “Mulla, you lost your ring in the room, why are you looking for it in the yard?”

Mulla stroked his beard and said: “The room is too dark and I can’t see very well. I came out to the courtyard to look for my ring because there is much more light out here.

The argument for a single case definition seems to rest on mere platitudes and statements of faith: “ME/CFS exists.... We believe ME/CFS is a distinct disease.... A clear case definition with validated diagnostic tools is required before studies can be conducted.”

 

[Jonathan Edwards]

Just as a thought from someone who spent a whole career researching a disease and its treatment - I think criteria are irrelevant. I don't think I ever knew what the official criteria for rheumatoid arthritis were. They made no difference to my research or the treatments that my colleagues and I developed. There are issues for epidemiological studies but if these are done well then the raw data can be matched up with all available criteria options (as I have seen done recently for ME). Working towards yet another set of criteria is a complete waste of time at this point to my mind.

PEM sounds important but I would not like to think that people without PEM had less attention to their problems than those with it. That does not seem fair. I would be very much in favour of studying more homogeneous subgroups but I see no need to leave anyone out in the cold.

 

[PennyIA]

Just as a thought from someone who spent a whole career researching a disease and its treatment - I think criteria are irrelevant. I don't think I ever knew what the official criteria for rheumatoid arthritis were. They made no difference to my research or the treatments that my colleagues and I developed.

I'm a firm believer that bigger studies of potential biomarkers may identify subgroups for us and create a new, better definition anyway. Without potential biomarkers, everything is just throw us in the same stew pot as depression and may lead to things working for depressed people being forced upon those of us who are not depressed.

 

[Bob]

...why the need for more time spent on CBT/GET...

Many of us agree that it's not CBT, in itself, that is the problem, but it's the way it is used both by ignorant physicians, and as a political tool, that is the problem. Its current use undermines patients, both politically and medically, but many of us agree that the right type of CBT can help some patients to cope with chronic illness. As they are clearly stating that CBT cannot treat the illness, and that ME/CFS is not a psychiatric illness, then this changes things for us, and empowers the patient community. The document is implicitly dismissive of the type of CBT that would define ME/CFS as a maladaptive psychological disorder, or that would attempt to 'treat' the illness.

We can point out to them, in our submissions: that CBT/GET do not actually lead to real-world improvements for physical function, or improvements in objectively measured physical function; that the evidence in favour of CBT/GET is based on non-blinded studies (i.e. low quality research); and that CBT/GET research is based on the Oxford criteria that is "flawed" and inclusive of "people with other conditions". And hopefully we can get their recommendations re CBT removed altogether.

 

[snowathlete]

I don't have any interest in blood. I just want to feel well after 22 years of being ill.

I am hurt by the abuse we have suffered by HHS. I don't think it's unusual or unreasonable for a victim of abuse to lose all trust in his/her abuser's recurrent yet unmet promises to reform.

@snowathlete wrote: "I feel some people are so hurt by the abuse they have suffered that they just want blood, and nothing else will do. But what purpose does this ultimately serve - does it get us where we need to be?"

How patronising and insulting. More to the point is that we have seen reports come and go, and have learned to 'read' them. Is it really believable that a committee of non experts trying to assess a large amount of evidence in a hurry could, with the best will in the world, be as clear minded and far sighted as you claim? And if they are, why the need for more time spent on CBT/GET, with the additional diversions of homeopathy and the newly introduced multimodal therapy?
.

I think we all want that @GalaxiiGrl. My point is not designed to criticise people for feeling let down (including myself), but to address the issue that after reading this thread, it seems to me that some people have totally unrealistic expectations and nothing will be enough to satisfy. My comment was probably a bit broad, but I think it is reasonable to raise that view and to ask whether people can really be objective given that history of abuse. I don't accept that it is patronising or insulting @Wildcat, but I'm sorry if you feel it was. Yes, we have seen lots of stuff come and go, but at some point this nightmare does end, it may go on much much too long but we shouldn't asume this time will be like the last, or that next time will be like this time. We should be cautious, I think, but also respond positively to positive signs as well as negatively to negative signs. It will never be all positive. I bet there are still people with cancers and HIV who are frustrated by and disapointed by things that powers that be do, even though in general they are much further ahead on the being listened to stakes.

 

[GalaxiiGrl]

PEM sounds important but I would not like to think that people without PEM had less attention to their problems than those with it. That does not seem fair. I would be very much in favour of studying more homogeneous subgroups but I see no need to leave anyone out in the cold.

I don't think anyone is suggesting that people without PEM should have less attention paid to their problems than those with it. The point is that people without PEM likely have a different illness than those with it, and should not be lumped together into the diagnosis of ME (or ME/CFS or whatever they decide to call it).

If someone has a non-cancerous lump, they're not diagnosed with cancer, and they're certainly not included in any research studies or clinical trials about cancer. However, that doesn't mean that the patient is left out in the cold; they simply get the appropriate treatment for a non-cancerous lump.

 

[snowathlete]

The Evidence Review acknowledges that CFS, ME and ME/CFS may “identify separate groups entirely,” and the Draft Report suggests that lumping together more than one disease (“e.g., Is ME/CFS one disease?”) may have resulted in inconsistent findings and/or research gaps. So why does the Panel insist “that the ME/CFS community agree on a single case definition (even if it is not perfect)?” Why must a single case definition be used to study more than one disease or patient population?

The argument for a single case definition seems to rest on mere platitudes and statements of faith: “ME/CFS exists.... We believe ME/CFS is a distinct disease.... A clear case definition with validated diagnostic tools is required before studies can be conducted.”

Yeah it is a bit of a contradiction, I agree. You would think there might be some attempt to identify subsets from existing data, or subgroup in some other way, or at least suggest studies that might accomplish this, but that's obviously not what this document is suggesting for whatever reason. I agree with Prof Edward's view that no one should be left out in the cold though and I guess maybe that might be a factor here. They probably should state a reason given the evidence review statements though.

 

[Bob]

PEM sounds important but I would not like to think that people without PEM had less attention to their problems than those with it. That does not seem fair. I would be very much in favour of studying more homogeneous subgroups but I see no need to leave anyone out in the cold.

You're opening a can of worms there, Jonathan. We've had extensive discussions about this over many years. Patients want ME defined properly, and recognised for what it is. PEM is one way to distinguish ME from ideopathic chronic fatigue and other fatiguing illnesses. It's not a perfect indicator, but it's considered a fundamental feature that defines and distinguishes ME. Sure, we don't want to leave other patients out in the cold, but it does no one any favours to diagnose them with ME if they don't have the widely-recognised fundamental feature of the illness. A mis-applied diagnosis of ME can lead clinicians to miss the illness that the patient actually has. There's typically a 30-40% misdiagnosis rate for CFS/ME.

 

[snowathlete]

I don't think anyone is suggesting that people without PEM should have less attention paid to their problems than those with it. The point is that people without PEM likely have a different illness than those with it, and should not be lumped together into the diagnosis of ME (or ME/CFS or whatever they decide to call it).

If someone has a non-cancerous lump, they're not diagnosed with cancer, and they're certainly not included in any research studies or clinical trials about cancer. However, that doesn't mean that the patient is left out in the cold; they simply get the appropriate treatment for a non-cancerous lump.

The problem though is that research might happen for those with PEM but not for others. There might be a danger that the psychobabblers then say, "well, this group dont have ME and are the CFS group we've always said existed. They need CBT and GET." And thus they end up out in the cold.
I have PEM so I'm comfortable with PEM being a major cornerstone of a definition. I have neuro-cognitive and immune difficulty too. But I don't have pain (not much compared to some, anyway) so what if that excluded me from some definition of the disease and I ended up in a much smaller group of say 50,000 in the UK who then got ignored? What about those without PEM then?

 

[Bob]

The Evidence Review acknowledges that CFS, ME and ME/CFS may “identify separate groups entirely,” and the Draft Report suggests that lumping together more than one disease (“e.g., Is ME/CFS one disease?”) may have resulted in inconsistent findings and/or research gaps.

So why does the Panel insist “that the ME/CFS community agree on a single case definition (even if it is not perfect)?” Why must a single case definition be used to study more than one disease or patient population?

That's a good point, and I think it's a question that should be submitted to them.

BTW, the ICC includes the "atypical ME" subgroup (i.e. "meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms"), so a single set of criteria could potentially include different subgroups.

 

[alex3619]

So why does the Panel insist “that the ME/CFS community agree on a single case definition (even if it is not perfect)?” Why must a single case definition be used to study more than one disease or patient population?

I would prefer a single tight definition for initial research, but with enough funding, as I have commented before, a proper research project could use even Oxford. It all depends on how its done, and the funding. A broad definition, with massive investigation, and an emphasis on subgrouping, could be done. The cost is enormous though. A narrow definition is needed to make the problem tractable and doable in reasonable time and with reasonable funding.

This is all tied up in the evidence review. We still do not have enough objective evidence to stratify the disease/s with any certainty.

The ICC comes closest to a research definition that subgroups the patient population, followed by the CCC. Nothing else comes close.

However in even the near future we might indeed have enough evidence, with various big data projects under way and modern systems biology we might well identify distinct as well as overlapping subgroups.

This entire process of making definitions is premature by a few years. Our experts were already using the CCC and ICC, and making research advances using them.

 

[alex3619]

There might be a danger that the psychobabblers then say, "well, this group dont have ME and are the CFS group we've always said existed. They need CBT and GET." And thus they end up out in the cold.

I have commented on this before. I don't think its so much a danger as their modus operandi. That is what they do.

 

[Jonathan Edwards]

I don't think anyone is suggesting that people without PEM should have less attention paid to their problems than those with it. The point is that people without PEM likely have a different illness than those with it, and should not be lumped together into the diagnosis of ME (or ME/CFS or whatever they decide to call it).

If someone has a non-cancerous lump, they're not diagnosed with cancer, and they're certainly not included in any research studies or clinical trials about cancer. However, that doesn't mean that the patient is left out in the cold; they simply get the appropriate treatment for a non-cancerous lump.

I don't see why the diagnosis of ME should be limited by that specifically if we have no idea what an ME is or how many sorts of ME there are. If we start by assuming that there is one 'special disease' called ME then I think we are sunk scientifically. I see no reason to think that. To be scientific we have to know what we mean in the first place. I don't think there is any analogy with cancer because we know precisely what we mean by cancer - it is a cellular proliferation that invades other tissues. If we want proper epidemiological studies we have to start out assuming we have no idea how many sorts of ME or ME-like problems there are or how much they overlap.

To be honest 'diagnostic criteria' of this sort belong to the nineteenth and first part of the twentieth century. In almost all other branches of medicine they have been abandoned. The only reason they are still around for ME is that without any sort of physiological explanation it is hard to provide reassurance to patients that at least the medical profession has some idea of what the prognosis is without tagging that to a name. In simple terms we cannot decide that PEM is the best way to recognise something when we have no idea what we think it is that we are trying to recognise.

 

[Bob]

In simple terms we cannot decide that PEM is the best way to recognise something when we have no idea what we think it is that we are trying to recognise.

But if you don't try to carefully define the illness in the first place, then how can you investigate the correct patients when there are no known biological markers? If you investigate every type of fatigued patient on the planet, including depressive patients, then how can you achieve meaningful results?

 

[alex3619]

it's really not crumbs as someone suggested earlier in the thread, it's at least half a baguette.

What, not a stale cheese sandwich with a pickle?

Its stale because its old. We already read pretty well all of this, from advocates and CFSAC. Result? No result, NIH and government inaction.

Best case scenario: the government wants change, and can't get political leverage. So these reports are to give it justification for action, new and impressive action.

Worst case scenario: the reports (I am including IOM) are intended to keep us busy, and via extreme reactions make us look like crazy people. They can then ignore us.

The reality: a report making recommendations is not tangible action. Its not even a promise of action. The NIH or other parts of government, and even other governments (its NOT all up to the US, when is most of the world going to step up?) need to take action. Governments are very very good at getting reports then doing nothing. Just look at the history of CFSAC.

 

[GalaxiiGrl]

The problem though is that research might happen for those with PEM but not for others. There might be a danger that the psychobabblers then say, "well, this group dont have ME and are the CFS group we've always said existed. They need CBT and GET." And thus they end up out in the cold.
I have PEM so I'm comfortable with PEM being a major cornerstone of a criteria. I have neuro-cognitive and immune difficulty too. But I don't have pain (not much compared to some, anyway) so what if that excluded me from some definition of the disease and I ended up in a much smaller group of say 50,000 in the UK who then got ignored? What about those without PEM then?

Snowathlete, I want to preface my response with a declaration that anything I say is not personal, and is not intended to start an argument. Not that you've given me any reason to believe you may assume so, I just want to be sure to avoid getting into a potentially stressful situation.

That said, I don't believe your argument makes sense. There are many symptoms included in the CCC and ICC that aren't required to receive a diagnosis of ME. For example, digestive issues is listed as a non-required criteria as well as pain. I'm certainly not suggesting that PEM be the ONLY symptom required for diagnosis. However, if exercise makes a patient's symptoms worse, he/she has PEM. If exercise doesn't make a patient's symptoms worse, he/she doesn't have PEM and therefore should have no problem exercising. This is why the PACE trial claimed that exercise is a helpful treatment; it included patients without PEM.

 

[Jonathan Edwards]

That's a good point about over-diagnosis and under-investigation, Bob. I realise this is complicated. But if the idea is to critique this report and do better then we need to open cans of worms. Almost everybody with rheumatoid arthritis has swollen joints, but there are a few with serious problems who never do. RA is a meaningful term because we can identify a common mechanism. If we have no common mechanism for 'ME' then criteria become circular.