Lipkin Study Press Conference 18th Sept

[Bob]

Hi rlc,

I know it's not perfect, but it's probably one of the best cohorts that's been investigated in such a high profile study, for a while.

They included viral-like onset patients, on Judy's request, in order to be more selective, to narrow down the cohort.

Lipkin is looking for subsets, so he's expecting a heterogeneous cohort of patients.

Hopefully this will just be the start, and if he does find any homogeneous subsets, then hopefully that will lead to better things.

And don't forget that the clinicians who provided the samples have years of experience with ME, so they might have provided homogeneous subsets of samples, from each of their clinics.

I think it's the best we can hope for at the moment, considering the decades of neglect. I think it's a step in the right direction.

I agree with your points about what we can do as patient advocates. It's a shame that the patient organisations aren't more interested in cohorts and mis-diagnoses. They could have provided a wealth of information to clinicians, and they could have helped to set up expert clinics which specialise in diagnoses and alternative diagnoses.

 

[rlc]

Hi bob, RE

I know it's not perfect, but it's probably one of the best cohorts that's been investigated in such a high profile study, for a while.

This cohort selection is so NOT perfect that they have no chance of getting any useful information out of further study of the samples from these patients. If they had for example just failed to exclude a rare diseases like Wilson’s because it’s rare then there is very little chance that more than one person if any were accidentally included in the cohort. But so many of the diseases that they have failed to exclude are extremely common.

Examples of this is that they didn’t check these people for celiac, Celiac is found in one out of every one hundred Caucasians in this study 139 of the 147 patients were Caucasians, so statistically there has to be at least one, but the statistic that one in one hundred Caucasians have celiac is based on the study of all Caucasians including all the healthy ones, this study has 137 Caucasians in it who all have the symptoms of celiac it can mirror the symptoms of CFS, so there could easily be ten, twenty even fifty of the patients in this study that have celiac not CFS.

It is estimated that 41.6% of the US population has Vitamin D deficiency one of the groups were high rates of vitamin D deficiency is found is those with poor health i.e. the people in this study see http://www.ncbi.nlm.nih.gov/pubmed/21310306 so it is more than likely that over half of the patients in this study have vitamin D deficiency and they failed to test them for it.

It is estimated that 20million Americans have sleep apnea which they didn’t check for and can cause the symptoms of CFS there statistically has to be patients in this study with it.

These are just examples of three of the common conditions that they didn’t check for that cause CFS like symptoms, there are many other like B12 deficiency, Folate deficiency, hemochromatosis, heart conditions, Insulin resistance and impaired glucose fasting glucose which they will have missed a lot of cases of by not doing the glucose tolerance test. Plus there are all the rarer conditions like Addison’s and Pituitary tumors etc that they haven’t checked for.

Statistically there is no way that the patients used in this study can be anything other than a mixed cohort with a large assortment of other known conditions.

They have basically failed completely to rule out a large number of common conditions that cause these kinds of symptoms. The first rule of studying any disease is to make sure that the patients you are studying have the disease that you are studying. This has not been done in this study at all.

Having a viral like onset does nothing to solve this problem many other diseases that they haven’t checked for will cause what appears to be a virus like onset but it isn’t, and almost all of the common diseases that they haven’t checked for are proven to damage the immune system and the first people can know about having these conditions is getting struck down with some common bug it’s not the bug that’s the problem it is the underlying disease slowly damaging their immune system that is the problem.

RE

And don't forget that the clinicians who provided the samples have years of experience with ME, so they might have provided homogeneous subsets of samples, from each of their clinics.

Sorry I know this will go down like a lead balloon with some people but, what scientific proof is there that these clinicians know what they are doing or are capable of distinguishing a ME patient from a patient with any of the other diseases that cause CFS symptoms?? By agreeing to the testing used in this study which doesn’t even test for the very common causes of CFS like symptoms, they have shown that they have a very poor knowledge of how to rule out other diseases. One also has to ask the question why is it that the NHS in the couple of studies shown in the MEreseach article can find close to 50% of the patients are misdiagnosed with CFS and have other known diseases and yet these CFS clinicians have never said anything about finding large numbers of misdiagnosed amongst the patients that come to them. Is the answer to this question that they are not testing their patients properly? Them agreeing to the testing used in this study would imply that they think this is adequate testing and are probably using similar testing on their patients and from reading the post of people that have seen these CFS clinicians which show the testing they got from them, I do frequently notice that many important tests are not included in what they have had done.

The reality is that there is virtually no replicated science in the field of CFS whatsoever and for any paper that says that they found something there is another that says they can’t find it, there isn’t even any agreement on what the symptoms of CFS are supposed to be, so how can someone claim to be an expert in something that there is no science behind, the only thing you can test a CFS Clinician on is their knowledge of what other disease need to be ruled out and what tests to do, this particular group of CFS clinicians have shown by agreeing to the testing requirement in this study that their knowledge of this probably isn't to flash.

These doctors have proclaimed themselves to be experts at CFS and often charge people extortionate amounts of money to see them, but we only have their word for it, people love them often to the point of worship because they constantly say the things that the patients want to hear, that CFS patients should get more research etc, etc. but this doesn’t make them good doctors. I think people should learn from what happened with XMRV many people loved Mikovits and the WPI because they said what people wanted to hear, but it turns out that they were completely wrong. And in the process many people had their hopes falsely raises and were separated from their money by donating to the WPI or paying extortionate prices for XMRV tests that turned out to just be worthless bits of paper.

If people are serious about wanting proper science done to find the cause of their suffering they have to demand higher standards, we can’t say that the exclusionary tests is better than in other studies so it’s OK. Exclusionary testing is either right or wrong, it either rules out all the other diseases that cause these kinds of symptoms or it doesn’t. The tests used in this study doesn’t even come close, so it is wrong. Lipkins Email address is at the top of the study so people should be contacting him saying that the testing to rule out other diseases is very poor and it has to be fixed, if people don’t they will continue studying what statistically has to be mixed cohorts.

I don’t think as you say “it's the best we can hope for at the moment, considering the decades of neglect. I think it's a step in the right direction.”

It’s not a step in the right direction it is a continuation of the bad science we have had for decades and we should not only hope for more we should be demanding it!

People also have to stop putting blind faith in CFS clinicians just because they are saying what people want to hear, they could be completely wrong about everything, just as Mikovits was, people should be demanding that they prove what they are saying, that they provide evidence of how they tests their patients to rule out other disease. They have to be held accountable for saying things like NK cell anomalies prove that CFS patients must have a viral cause affecting their immune system, NK cell anomalies are caused by large numbers of none virus related conditions, it has been known for years that NK cell anomalies are caused by depression http://www.sciencedirect.com/science/article/pii/0278584694900795

RE

I agree with your points about what we can do as patient advocates. It's a shame that the patient organisations aren't more interested in cohorts and mis-diagnoses. They could have provided a wealth of information to clinicians, and they could have helped to set up expert clinics which specialise in diagnoses and alternative diagnoses.

Yes it is a shame that the patient organizations aren’t more interested in cohorts and mis-diagnosis. But it’s up to the patients to stop leaving it up to the organizations that have failed them over and over again, and take matters into their own hands, because the studies on mis diagnosis rates in the ME research article are by the NHS therefore scientifically reputable there is a good chance of the press running stories about it and politicians acting on it because it’s not something they can be seen to be ignoring if they want to get elected.

I think something that a lot of people don’t realize about the press in the UK is that they don’t often cover ME, not just because it often leads to a whole lot of abuse from some of the extreme ME advocates, but because nobody gives them a storey based on facts.

I’ve noticed many people will post comments in the press along the line of Please don’t portray ME as a Mental illness studies show that NK cell anomalies etc exist in ME patients that prove it is a psychical illness, they then look it up find that all the things that people are saying prove ME is a physical illness are also found in mental illnesses and the majority of all illnesses and unless they have an overwhelming desire to lose their jobs they just can’t print what people want them to say, because the science says that it’s not true.

But with these studies that find the high misdiagnosis rates there done by the NHS they are very likely to get printed and are very likely to lead to a change in the way that people are treated in the UK.

All the best