Article: UK Govt Turns New Leaf ? (Why the UK Loves ME/CFS More (!) )

Article: UK Govt Turns New Leaf (Why the UK Loves ME/CFS More )

You can view the page at http://forums.phoenixrising.me/content.php?528-UK-Govt-Turns-New-Leaf-(Why-the-UK-Loves-ME-CFS-More-)

 

Yes Calathea, your thread on the psych study was impressive. I am so sorry that AfME keep peddling this psych rubbish.
Very upsetting for you.

re Action for ME - well, I'd been wondering why they are pushing that dreadful psychological "study" being done on ME, but reading this thread has explained it. I naively rang AfME on Thursday to complain, and they said they'd look into it and ring me back on Friday. Oddly enough, they didn't.

 

No big deal? According to an international panel of experts (ICC), Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments and waste scarce research funds.

But, but, but, but Ember - I didn't say it was not a big deal - I think it probably is a a big deal...I just said not all was lost.

Are you sure they are all using Oxford criteria? I did see that the XMRV study at Kings College used the Fukuda criteria. While the Canadian Criteria would be much better the Fukuda criteria is not worthless; it has been used in studies that demonstrate NK cell dysfunction, exercise intolerance, altered gene expression after exercise, etc. Is the MHC wedded to the Oxford criteria in this set of studies?

The Lights used Fukuda, the spinal fluid studies that worked are using Fukuda, the VO2 max exercise studies used Fukuda, the NK cell studies used Fukuda, the muscle studies that backed up the McCardle studies used Fukuda and on and on; virtually everyone who's had a positive result has used Fukuda (because virtually no one has used the CCC).

This is not to say that the CCC would not be much better...I don't know how it could not be. While I would love to have the UK adopt the CCC or some version I don't expect them to do that at this point. (Therefore I'm not disappointed if they don't. Looking at their history I don't see how they COULD adopt it - its too big of a jump for them.)

 

You're reading into my statement something I did not say.

I apologize if this is the case, Cort. But I do find it misleading for you to purport to explain why the UK loves ME/CFS more (!) when they may not be studying ME/CFS (defined by the CCC) at all. In fact, they may not even be using a good definition of CFS.

Contrary to what you seem to suggest here, the CCC are used in Canada and in many other countries in studies with better designs, including those in the US. (Thanks for editing out some of the statements to which I've responded.)

 

Fukuda has been and probably still is the internationally recognised standard definition. Its nice to see CCC and hopefully ICC gain ground, and in time they might become the standard, but this is not a done deal yet. Furthermore studies are more comparable using Fukuda. For now the better studies use both Fukuda and CCC, in time I think it might be Fukuda and ICC until the research advances far enough that everyone is happy to drop Fukuda. Just don't use Oxford or Empiric. Bye, Alex

 

The Lights used Fukuda, the spinal fluid studies that worked are using Fukuda, the VO2 max exercise studies used Fukuda, the NK cell studies used Fukuda, the muscle studies that backed up the McCardle studies used Fukuda and on and on; virtually everyone who's had a positive result has used Fukuda (because virtually no one has used the CCC).

Some fact-checking may prove helpful here. For example, here's how Reach1st reports on the Lights' work, Exercise Challenge Reveals Potential CFS Biomarkers (http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers):

In this particular study, the research team identified three specific groups of individuals:

FM-only: 18 patients who met American College of Rheumatology criteria for fibromyalgia (FM) (but did not also meet CFS or ME/CFS criteria and fatigue did not cause as much compromise of normal daily activities compared to the CFS/CFS+FM group);

CFS/CFS+FM: 48 patients who met CDC criteria for CFS; 46 of these 48 (96%) individuals also met the Canadian clinical criteria for ME/CFS; 33 of the 48 (69%) also met criteria for FM; and

Controls: 49 individuals considered 'healthy' who did not meet criteria for FM, CFS, ME/CFS or several other conditions that would have excluded participation.

The study clearly disinguishes between CFS and ME/CFS, noting that 96% met the Canadian clinical criteria for ME/CFS. Like Alex, I am of the impression that the better studies use both Fukuda and CCC.

 

I'll have to disagree. Again - if you expect the UK medical est. to launch a major program to find the pathophysiological problems behind CFS or to treat it like well-defined diseases like lupus, rheumatoid arthritis, etc. I think you're going to be disappointed. .

You mean like the Norwegian Health authorities completely changed their focus overnight? I think the problem is people settling for this kind of nonsense, Cort. We are only disappointed because there are people like you, including the UK ME charities, that let the medical establishment continue to get away with less. If we all spoke together and demanded proper research, then that is exactly what we would get. It is only because the very people suppose to be representing patients with ME are celebrating these studies, studies that are a total rip off. That is to celebrate the abuse of patients with ME.

Regarding rituximab, even if they did 1 million studies on Sjgren's syndrome and found that it was the best and safest treatment in the world for that condition, not one single ME patient would ever be given the drug on that basis. Simply put research on Sjgren's syndrome is only applicable to Sjgren's syndrome. You can hypothesise all you like whether there are similarities between Sjgren's syndrome and ME, but it means absolutely nothing in the real world. To move research forward with ME one has to study ME, to suggest any different is completely nonsensical. Since we already know that rituximab potentially works for ME, the only logical step is to test it on large trials of ME patients.

Oh and just a note, rhematoid arthritis and Lupus well defined? Please look that up, there is actually no 100% consensus on how to define either of those conditions. Whilst you will see consensus in research articles, in real life the use of those criteria actually excludes as many as 50% of patients that really do have RA. This is mainly because for research they want patients that have elevated ESR's such that response to therapy can be easily objectively montiored.

The Canadian Consensus Criteria for ME are actually just as well defined as the criteria for RA, MS or Lupus. The only reason people with ME continue to be mistreated is because people continue to suggest that ME is a poorly defined group of symptoms. There are tests, just as reliable tests as for MS, Lupus and RA (such as VO2 max treadmill etc) and we should all demand that ME patients are defined as such.

 

Is there any evidence that these studies will use Oxford criteria? I hadn't seen any.

I am wondering the same thing. What facts do we have about which criteria will be used?

 

This is an exercise in "damage control"
It's a sop, like Wessely's acknowledgement of HPS Axis issues, a "get out of jail free" card they can later claim they "did try, look, see this? We aren't bad guys!"
bah! Typical UK weasel-mouthed, lily-livered crap, sorry.
Establishment here is so rotten, so interwined, so incestous (*) and stupid, it's beyond belief :/

Go read up on the history, not until calamity and an ass kicking occurs, do these scumbags do anything.
For our Colonial Cousins across the Atlantic that would be like after the, ahem, issue with Tea Bags at Boston which the locals won , the Uk afterwards had a governmental review showing the obvious truths and how it could all have been avoided or come to a more friendly split with no bloodshed at all, but NOOOOOO they didn't listen to such issues beforehand from many, many voices, and therefor, we had a war between our own peoples that left lasting troubles for over a century :/
(sorry forget the name of the "report" or commision or whatever it was, sigh, memory's on the fritz as usual, anyway lead ot reform of colonial practices and administration)

(*) not in sexual term, more as in nepotism in a partcularly decietful and long lasting fashion, the "old school tie" network, ensuring friends/relatives work on variosu baords, committees etc that a small number of folk have vast power, alas it's "incestous" as the tight grouping of small number of small minds with such power is very harmful

 

Thanks for a good feature Cort.

And re your comments, I hadn't realised this:

I just looked into this. If you look up diabetes at the MRC you'll get studies on COPD, neuropathic pain, weight loss after obesity surgery, assessing dietary intake, etc., etc. The number of studies that are actually focusing on what is causing diabetes are in the minority. There are alot of studies on managing the symptoms (neuropathic pain), how weight loss works (obesity is a big problem in diabetes), how to optimize diet...all these kind of ancillary projects...

It puts things in perspective to a certain extent. Nor had I recognised your point that Firestormm reiterated: "Imagine 0.5% of your NIH budget on CFS/ME!! Staggering compared to what is spent currently!! Mindblowing in fact!!"

Regardless of whether we agree with the validity of the new MRC funded studies, pointing out the difference in funding allocation is a great way to champion more biomedical research funds in the US. 'If the Brits can do it, why not the US? What about some friendly competition here?

 

You mean like the Norwegian Health authorities completely changed their focus overnight? I think the problem is people settling for this kind of nonsense, Cort. We are only disappointed because there are people like you, including the UK ME charities, that let the medical establishment continue to get away with less. If we all spoke together and demanded proper research, then that is exactly what we would get. It is only because the very people suppose to be representing patients with ME are celebrating these studies, studies that are a total rip off. That is to celebrate the abuse of patients with ME.

Regarding rituximab, even if they did 1 million studies on Sjgren's syndrome and found that it was the best and safest treatment in the world for that condition, not one single ME patient would ever be given the drug on that basis. Simply put research on Sjgren's syndrome is only applicable to Sjgren's syndrome. You can hypothesise all you like whether there are similarities between Sjgren's syndrome and ME, but it means absolutely nothing in the real world. To move research forward with ME one has to study ME, to suggest any different is completely nonsensical. Since we already know that rituximab potentially works for ME, the only logical step is to test it on large trials of ME patients.

Oh and just a note, rhematoid arthritis and Lupus well defined? Please look that up, there is actually no 100% consensus on how to define either of those conditions. Whilst you will see consensus in research articles, in real life the use of those criteria actually excludes as many as 50% of patients that really do have RA. This is mainly because for research they want patients that have elevated ESR's such that response to therapy can be easily objectively montiored.

The Canadian Consensus Criteria for ME are actually just as well defined as the criteria for RA, MS or Lupus. The only reason people with ME continue to be mistreated is because people continue to suggest that ME is a poorly defined group of symptoms. There are tests, just as reliable tests as for MS, Lupus and RA (such as VO2 max treadmill etc) and we should all demand that ME patients are defined as such.

I agree with the frog on this one ... Mediocracy and politics in medical science has kept them from making the same types of progress as other sciences. None of us would accept such mediocracy out of the other sciences so why accept it out of this one ? All of us have our own computers and small cell phones which weren't possible until recently. The demand for better technology is what fueled this ...

FWIW ... I had some of the same testing (Pacific labs bicycle test, elevated viral tirers, etc ) for ME/CFS between 1990 - 1992 that they're saying will help them better define ME/CFS now. That was 20 years ago ... Where's the progress ?

tc ... x

 

This is not to say that the CCC would not be much better...I don't know how it could not be. While I would love to have the UK adopt the CCC or some version I don't expect them to do that at this point. (Therefore I'm not disappointed if they don't. Looking at their history I don't see how they COULD adopt it - its too big of a jump for them.)

It wasn't too big a stretch for NHS Scotland to recommend diagnosing ME with the Canadian Criteria and separating it from CFS (http://niceguidelines.blogspot.com/2011/11/nhs-scotland-recommends-to-diagnose-me.html).

 

Dr. Whites PACE trials ended up being easily the most expensive study ever done anywhere on ME/CFS

This description should be reconsidered. The PACE trial was emphatically not an ME/CFS study.

Professor Hooper explains, The MRC PACE Trial intentionally used the Principal Investigators (PIs) own entry criteria for 'CFS' (the 1991 Oxford criteria), yet these criteria lack diagnostic specificity, have been shown to have no predictive validity, and select a widely heterogeneous patient population which may or may not include people with true ME/CFS. It is virtually unheard of for studies to use criteria that have been superseded; indeed, one of the PIs himself, Professor Michael Sharpe who was lead author of the Oxford criteria -- stated in 1997 that they 'have been superseded by international consensus' (Occup Med 1997:47:4:217-227)."

 

"Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?"

No! No! No!

One thing I do know is that fixing the sleep issues is not going to cure the ME/CFS, pity money is going into studies for things already known. Wasted research money!!

Ive had stages of this illness where Im not suffering any tiredness at all and sleeping quite well and a normal persons normal sleep. Thing is I still get rather ill to any physical activity (feeling sick, headaches, dizziness and weakness to the point Im unable to stand, muscle pain etc. This weakness is not due to any tiredness or exhaustion but more so that my legs just "suddenly" cant support body weight so nothing to do with not having a good sleep).

I so wish the ones who give out grants would turn to the patient community themselves for advice on where to best put research money cause after living with this lillness for so long, most of us know what areas not to be wasting money on.

 

Regarding rituximab, even if they did 1 million studies on Sjgren's syndrome and found that it was the best and safest treatment in the world for that condition, not one single ME patient would ever be given the drug on that basis. Simply put research on Sjgren's syndrome is only applicable to Sjgren's syndrome.

sorry Ive forgot who Im quoting above but I completely agree with that. Any study done on Sjogrens, they will not end up using the findings to support ME/CFS as they are different illnesses (thou of cause can coexist).

Money for ME/CFS being used to study Sjogrens, reminds me of how the CDC years ago took and used CFS research money for other illnesses!!! Sjogrens IS NOT ME/CFS. Seems the MRC hasnt a clue really what ME/CFS really is as they constantly confuse "different" illnesses together.

What will they be doing next.. using ME/CFS funding money to do FM or headache studies or allergies??? Using the ME/CFS money to study Sjogrens is no different to them doing that. This is outragous.

All those illness deserve to be studied too and should be getting their own funding.

Cort I think you are overly postive at times (not a bad thing as we dont want everyone fitting that ME/CFS=depression mold). I too think Im overly postive at times but reading the comments on this thread have helped bring me back to reality.

Thanks everyone

 

Thanks for all the info, Cort.

I just looked into this. If you look up diabetes at the MRC you'll get studies on COPD, neuropathic pain, weight loss after obesity surgery, assessing dietary intake, etc., etc. The number of studies that are actually focusing on what is causing diabetes are in the minority. There are alot of studies on managing the symptoms (neuropathic pain), how weight loss works (obesity is a big problem in diabetes), how to optimize diet...all these kind of ancillary projects...

But neuropathic pain is an effect of diabetes and diet is key to managing it, whereas Sjogrens syndrome and Hep C arent proven to be related to ME/CFS!

The $2.5 million going to these studies is about .5% of the total budget of the MRC (@ 550 million dollars). If the NIH with its 32 billion dollar budget was funding ME/CFS at the same rate it would be spending a whopping 150 million dollars and the CDC would be spending $30 million for a grand total of 180 million dollars a year. (ME/CFS currently gets around $9 million/year )

Is the $2.5 million a yearly sum, or is it supposed to last for a number of years? Is it in fact 0.5% of the MRC budget for that same time frame?

I welcome the change of direction at the MRC and recognize that it probably has taken a lot of lobbying from people like Charles Shepherd to bring on this change. But I wouldn't agree with the statement that the UK loves ME/CFS more... A LOT of damage has been done to the ME/CFS community by the UK authorities, and it stretches far into other European countries as well. Patients are forced to undergo CBT and GET, or they won't get disability allowance. The image of ME/CFS as a psychosocial illness is firmly put into most minds, in medicine and in society, and it will take decades to change that. In the US, funding has been ridiculously low, but there hasn't been the same massive psychosocial lobbying. Living in another European country, if I could choose between taking my ME/CFS self to the UK or the US, I would certainly go with the US.

 

xxx - double posted, sorry! (is there no way to delete posts?)

 

Originally Posted by Cort View Post

I just looked into this. If you look up diabetes at the MRC you'll get studies on COPD, neuropathic pain, weight loss after obesity surgery, assessing dietary intake, etc., etc. The number of studies that are actually focusing on what is causing diabetes are in the minority. There are alot of studies on managing the symptoms (neuropathic pain), how weight loss works (obesity is a big problem in diabetes), how to optimize diet...all these kind of ancillary projects....

I agree with Emma above. How many times are Diabetes and Coronary Heart Disease rolled out to try and prove that "management" and "psychological" approches are appropriate for physical illnesses. Cort Johnson is getting dangerously close to the views of Simon Wessley's, who in his latest article on psychological treatment of ME claimed almost exactly the same thing to justify the abuse of ME patients with CBT and GET.

Lesson 101 medicine. Diabetes and Coronary Artery Disease are disorders that are caused to a large extent by lifestyle choices, and similarly lifestyle choices are crucial to management. Of course depression and psychological factors affect lifestyle management, depressed diabetics are more likely to eat cakes and not take their meds correctly. In other words, those projects are not ancillary but looking at causal factors! If you look up any classical physical illness, where lifestyle does not cause the problem or is a minor factor, you will see that the MRC does not spend money on "ancillary" projects. And this then comes back to what ME is - is it a liefstyle choice as Wessely would like to claim or it seems Cort is now suggesting, or is it a neuroimmune illness caused by a viral infection?

I've just looked up Sjogrens syndrome and rituximab - 122 Pubmed matches - further trials of rituximab warranted.

To confirm a previous post above, it is only because some people are supporting these disgraceful excuses for medical trials that they are due to go ahead. The UK All Party Parliamentary Group on ME are meeting to discuss the trials and will report that the response to the news from our charities was postive! Had people grown a back bone and demanded proper research on ME then it is possible that the All Party Parliamentary Group would have urged the MRC to rethink this disgraceful lip service to investigation of ME.

Regarding the sum of money involved, it is a one off sum that is not likely to be repeated, therefore comparisons with the NIH are difficult, but claims that it is a good starting point are also deceptive. It is not a starting point, but a one off hand out that, as others have said, is being stolen for other research.

 

''talk to any number of researchers and you'll get differing opinions''

And this is where the problem truly lies. Not enough attention is being paid to patients in normal everyday appointments, let alone organized studies.
If your extremely lucky you'll encounter a GP or specialist that isn't just a nodding dog, whilst privately thinking that the small amount
of info they were taught at medical school (ie Cog Therapy) is the answer to everything.
My GP said to me, "im sure there's a large amount of anxiety related to this illness, perhaps even causing it'', now he was actually on one level
very correct, our bodies don't produce the correct chemical reactions to stress, but that's a result of the illness, not the root cause.
Quite frankly, unless there is wholesale biochemical research, how are the 'researchers' ever going to really know ?
I defy any sufferer with M.E to tell me that graded exercise combined with Cognitive support is any help at all.
Im also sick of hearing about the 'politics' of M.E too, about the 'worry' of it's potential cost of the welfare bill. They either DO help
people in dire health crisis, or they do not. This theoretic stance is actually a waste of our lives. Not time, but lives. We only
get one shot at being alive, and decades are being wasted with all the talk and incorrect conclusions, to be honest, i don't think
the western world governments could have made a worse job of M.E treatment and research if they were actually trying.

 

Just to clarify, the UK's Medical Research Council is known as the 'MRC' for short. There have been a few references to the 'MHC' in error.

 

I think there is fundamental problem in the UK - yes nodding dogs - disbelieving GP - 4 disbelieving Docs in Accident and Emergency (collapsing and passing outs) - the answer a psychiatrist - this research has to be a long overdue and a slow start for all in medicine UK involved in patient "false illness beliefs". Decades here (history preserved) reveals all and those who opposed what is so obvious to sufferers the extent of this illness. The Psyches are so embedded in medicine here I doubt taking an ingrowing toenail to my GP anymore, most especially when passsings out don't seem to register with them. but back to things more serious things and greater wisdom for all.