An Uncommissioned Editorial
Andrew Lloyd produced one of the most seminal series of studies in ME/CFS history. The Dubbo studies established that a wide variety of pathogens trigger ME/CFS in about ten percent of those infected. Stronger symptoms and high cytokine levels early in the illness appeared to set the stage for ME/CFS. Lloyd’s formula caught on and other researchers have since copied his powerful model of investigating ME/CFS as it occurs in real time.
Andrew Lloyd – ME/CFS researchers and op-ed writer
The Dubbo studies established Lloyd as an important thinker and researcher in ME/CFS.
Andrew Lloyd is also known as a great debunker. I remember him standing up at the Symposium on Viruses, fearlessly thrashing – with many of the researchers present – study after study for their shortcomings.
He’s still thrashing away. In a recent op-ed “The Long Wait for a Breakthrough in Chronic Fatigue Syndrome” commissioned by the British Medical Journal, Lloyd hailed cognitive behavioral therapy and graded exercise therapy for the advances they’ve presented while largely dismissing other avenues of study.
He stated
“Over decades, research into the pathophysiology has failed to find convincing evidence of either persistent infection or immunological, endocrine, or metabolic change”
It’s true that “convincing” evidence; i.e. well replicated evidence is lacking for many factors but not for every factor. Certainly not for natural killer cell dysfunction. Lloyd’s dismissal of that finding must have been a jaw-dropper for his colleagues in Australia and elsewhere who are busy trying to figure out what’s going on there.
Even Lloyd’s former funder, the CDC, which stayed away from natural killer cells for decades, no longer questions the veracity of the NK cell findings in ME/CFS. The CDC, in fact, has attempted to get at the cause of the NK cell dysfunction and has talked of producing a more readily available test.
Exhaustive Array of Treatment Trials Fails in ME/CFS
Lloyd asserted that the treatment aspect of ME/CFS is, with two exceptions, equally bleak.
““Similarly, an exhaustive array of randomised controlled trials seeking curative outcomes from antiviral, immunological, hormonal, antidepressant, and many other therapies have failed to show any benefit over placebo, or failed the replication test.”
The Oxford Dictionaries definition of exhaustive is “examining, including, or considering all elements or aspects; fully comprehensive”. This is the first time I’ve ever seen that adjective applied to treatment trials in ME/CFS.
A search for randomized, controlled clinical trials for ME/CFS for the past five years was exhausting (through @ 1800 Pubmed citations) but it hardly uncovered an “exhaustive array”of treatment trials.
The search for randomized clinical trials in ME/CFS suggested an exhaustive array of clinical trials had hardly been undertaken in ME/CFS
Eleven trials were found over five years, six of which had positive effects. They included a negative Clonidine trial, a positive yoga trial, a negative Vitamin D3 trial examining vascular health , a positive Coq10 trial , a positive qigong trial, a lukewarmly positive acupuncture trial, a positive Rituximab trial, a somewhat positive valganciclovir trial, a positive lisdexamfetamine trial, a positive Ampligen trial.
Other positive non-randomized, controlled trials included antivirals, B-12 and folate, and a positive sodium oxybate trial. Over the same period of time dozens of CBT/GET trials and analyses of CBT/GET trials were done.
Contrary to Lloyds assertions most of the trials, in fact, had positive results – probably as positive as the results in the CBT/GET trials. Their major problem didn’t appear to be their efficacy, but in getting replicated – something that only appears to occur regularly with government supported CBT/GET trials.
Eleven trials over five years hardly constitutes an “exhaustive” search for treatments. What might an exhaustive search look like? The eighty plus randomized trials (and analyses of randomized trials) that took place in multiple sclerosis over the past year.
Lloyd failed to note that the small sizes and study design problems permeate so many of the poorly funded ME/CFS trials, that the recent AHRQ report rejected over 90% of them. Nor did he note the enormous discrepancy in resources provided to CBT/GET trials relative to others. Size matters in clinical trials and CBT/GET trials tend to be larger than other trials. The same effect that fails to achieve significance in a smaller trial, may very well do so in a larger trial. The playing field between CBT/GET and other treatments is simply not level.
Four Areas of Significant Progress
Lloyd asserted that convincing progress has not been made in immune, metabolic, endocrine or infectious disease research or in most treatment areas. Next he provides some cheer, though: he reports that significant progress has been made in four areas.
- It’s now clear that pathogens can trigger ME/CFS
- Brain imagining studies implicate the brain as the center of pathophysiology in ME/CFS
- Mood disorders and sleep disorders provide the basis for treatments
- Cognitive behavioral therapy (CBT) and graded exercise therapy (GET) help patients manage their symptoms.
With point four we get to the central theme of the editorial. The op-ed, it turns out, was not about the next breakthrough at all. Lloyd spends little time discussing potential breakthroughs in ME/CFS. The op-ed is intended to bolster CBT and GET’s reception in ME/CFS. That is what the BMJ apparently asked Lloyd to deliver and that’s what he spends the most time on. Lloyd states
“there is solid evidence from multiple controlled studies that patients can gain control of symptoms and functional improvement through multidisciplinary interventions incorporating graded exercise therapy and cognitive behavioural therapy. These interventions have clearly positive outcomes in systematic reviews and meta-analyses”
But is the evidence really so solid – so “convincing”? Lloyd has dismissed much of the progress the field has made because of the lack of “convincing” evidence, but is he applying the same rigorous standards to CBT and GET?
He reported that the Cochrane report on GET in ME/CFS concluded “patients with CFS [chronic fatigue syndrome] may generally benefit and feel less fatigued”. The same Cochrane report, however, also stated GET did not affect “physical functioning, depression, anxiety or sleep” and they were not able to draw any conclusions regarding it’s ability to reduce pain, increase overall health or reduce the use of health service resources.
Several distinguished reports suggested Lloyd overstated the efficacy of both GET and CBT
The 2009 Cochrane Report on CBT was much less sanguine than Lloyd regarding the positive effects of CBT in ME/CFS. CBT did increase the percentage of patients showing clinical improvement relative to those who received standard clinical care by about 50%. Even with that 50% gain, though, the majority of patients (60%) still showed no significant clinical improvement at all.
Even the 40% improvement rate was something of a chimera. Follow up studies suggested that people who remained on the CBT regimen did continue to have lower fatigue levels, but so many people stopped CBT that in the end the study found no difference in fatigue levels between those who’d participated in CBT and those receiving usual care.
That begs three questions:
(1) If your fatigue was really substantially improved by a treatment would you stop it?
(2) What use is a treatment, really, if it only it works when you’re part of a treatment trial?
(3) Why does the most virulent opposition to these practices occur in the countries that are saturated with them? Shouldn’t we expect satisfied patients in these countries to be leading the charge for CBT/GET?
The AHRQ reports provide another “gold-standard” of analysis. The recent AHRQ report Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome hardly provided a strong endorsement of either CBT or GET.
Contrast the “solid evidence” and “clearly positive” outcomes Lloyd asserts CBT has in ME/CFS, with the “moderate” confidence the AHRQ had that CBT is able to reduce fatigue and provide “global improvement”. Or the low confidence they had, that CBT is able to improve/enhance quality of life, or any kind of important functional measure (overall functioning, increase working hours, or reduce work impairment.)
As Lloyd was citing one report stating there was little evidence of harm in GET the AHRQ report was acknowledging the dangers associated with poorly managed exercise and GET programs. They noted that harms were not well reported in GET studies and that several factors, including high degree of harms in one trial, high dropout rates in another, and higher withdrawal rates whenever the arms of trials included exercise, indicated they could be significant.
The AHRQ also reported that several studies find that exercise worsens symptoms, and that an ME Association survey reported that GET had higher rates of symptom exacerbation than other treatments.
Nor did Lloyd note the confounding factors that the Oxford definition – commonly used in both types of studies – may introduce. The AHRQ report warned that studies containing the Oxford definition, “in particular”, might not contain any ME/CFS patients. The IOM report simply recommended that the Oxford definition be consigned to the dustbin of history.
Consider that nowhere are CBT/GET presented as producing other than moderate benefits in a few areas. Then consider how easily those moderate benefits might disappear if more rigorous cohorts were used, or if smaller trials were done.
Lloyd’s clearly positive outcomes and strong evidence seem to be an overreach when other citations are referenced.
Poor Fitness
Lloyd does present an enlightened viewpoint of why GET may be helpful. Instead of placing the “blame” on overly worried patients he suggests that nervous system sensitisation that takes place during exercise is placing patients in pain causing them to avoid exercise or to go for broke and suffer the consequences in a crash-burn pattern. He also adds the important note that GET programs should be personalized.
Lloyd sticks his head in the sand, though, when he states “..there is little evidence for loss of aerobic fitness in patients with chronic fatigue syndrome, and limited evidence for improved physical performance after successful graded exercise therapy.”
Lloyd, then, accounts for the rather disturbing fact for GET proponents that there’s no evidence indicating that it improves physical functioning by asserting there simply is no problem with physical functioning; i.e., the aerobic pathways are functioning fine in ME/CFS.
By doing so he negates several studies showing declines in energy production during a two-day exercise testing regime as well as other studies documenting problems with energy production pathways in ME/CFS. I don’t think anyone believes the aerobic energy production situation in ME/CFS is resolved (the studies tend to be small), but the evidence is trending strongly in one direction – and Lloyd is trending in another.
Lloyd called the emergence of two therapies that do not increase functioning – in a disorder with very high rates of functional impairment- significant progress.
Lloyd, thankfully, notes that criteria for recovery in the Pace trial were skewed and that its estimates for recovery (25%) were overly generous. Even mentioning the word recovery, however, in this ceiling afflicted, functionally impaired (no valid assessments of functioning) trial with its geriatric results on the walk test is problematic.
In the end Lloyd counts as significant progress two therapies neither of which have “convincingly” been shown to increase functionality at all in an illness that is significantly more functionally impairing than congestive heart failure, type II diabetes mellitus, acute myocardial infarction, multiple sclerosis, and depression. This in an illness that Bill Reeves of the CDC stated is also as functionally impairing as people with AIDS, breast cancer and chronic obstructive pulmonary disease”.
This is not to say that CBT and a properly managed (preferably heart-rate based) GET prgram cannot be helpful. I believe they can be. Nobody knows how to manage a significant chronic illness and if CBT or other practices can help people manage their illnesses better and improve their health somewhat, I’m all for that. Dr. Klimas, for instance, employs heart-rate based exercise programs to good effect.
These programs have their place in ME/CFS and FM and other illnesses. But should we, in year 2015, be celebrating the fact that we have CBT/GET or should we be emphasizing the fact that since they appeared some twenty years ago nothing else has come along? CBT, by the way, appears to produce about the same benefits in multiple sclerosis – modest decreases in fatigue – that it does in ME/CFS.
Lloyd’s bar for progress – the recognition that mood disorders and sleep issues are present in ME/CFS– and that CBT/GET helps –is incredibly low. He could have made the same case ten years ago.
The big surprise regarding Lloyd in this op-ed is not that he’s controversial – he’s always been controversial – but that his op-ed lacks so much rigor. The researcher who with some joy in his heart loved to poke holes in other researchers findings, is not being rigorous himself. He’s become more of an advocate rather than a trusted resource.
He’s the wrong man for the job, anyway.
It’s understandable for Peter White to publicly support CBT and GET: his work depends on CBT/GET funding, but why is Andrew Lloyd doing that? It’s clear why BMJ would want him; he’s a respected researcher with no CBT work in his past. He’s not tooting his own horn. So why is he doing it? Why did he feel the already CBT/GET saturated Brits needed an op-ed asserting the primacy of CBT/GET? I have no idea.
Business As Usual Vs Urgency
Contrast the warm and fuzzy light Lloyd casts the state of ME/CFS with the urgent appeals for funding by two large federally funded reports – produced, one might add, mostly by outsiders. Here’s Lloyd touting the “modest increments” of progress made in ME/CFS.
“As is often the case in medical research, progress is predominantly made in modest increments not breakthroughs”
Here’s what the federal reports have to say about the state of ME/CFS.
“Remarkably little research funding has been made available to study the cause of ME/CFS, mechanisms associated with the development and progression of the disease, or effective treatment, especially given the number of people affected.” Institute of Medicine
“Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized….Over the last 20 years, minimal progress has been made to improve the state of the science for patients with ME/CFS. Innovative biomedical research is urgently needed to identify risk and therapeutic targets, and for translation efforts.” NIH Pathways to Prevention Report
A Call For Stasis
Two faces of ME/CFS – the IOM/P2P reports and Lloyd’s warm and fuzzy account in the BMJ: which better reflects your reality?
Marx said religion is the opiate for the masses. I propose that op-ed’s like Lloyd’s are opiates for those who believe ME/CFS doesn’t need any more funding. Why would a disease whose treatment options for ME/CFS have been “exhaustively” explored need more funding? Why would patients who can manage their own symptoms (make them disappear?) need more help? Why would you give increased funding to a disorder whose advocates define “progress” like Lloyd does?
The op-ed, whether Lloyd intends it or not, is more a call for stasis – for business as usual – when just the opposite is needed. I don’t think it does ME/CFS or Lloyd himself any good. I imagine it just became a bit more difficult for some funders to sign a check with Lloyd’s name on it. And for what? To repackage mostly old news about CBT/GET, depression and sleep and call them significant progress? This is the wrong blog at the wrong time.
Lloyd begins the piece talking about the “decline and fall” of XMRV but I see a different arc. I see a man who was on the cutting edge of ME/CFS research in the mid 2,000’s ten years later asserting that mood disorders, sleep problems and CBT/GET constitute real progress in this disorder. It’s hard to see that.
The big mystery for me is not that this op-ed got written, but that Andrew Lloyd wrote it.
The big question for me is what the heck has happened to Andrew Lloyd?
What ME/CFS and what I would argue, is that what Andrew Lloyd really needs is more funding. I believe Lloyd should have gotten much more funding after the Dubbo studies, and I hope he gets more funding in the future. I also hope he stays away from op-eds. If he writes another one, though, I hope it’s one that argues for the possible breakthroughs that more funding could achieve, and how those breakthroughs might translate into treatments.
That would be an editorial worth writing and reading.
Inquiry of the Day on the Health Rising Forums: Tell us if you’ve tried CBT/GET and if you have how it went for you.
Everything I’ve done – CBT, as much exercise as I’m capable (still doing it), B1 in megadoses – that worked a bit has never made me more functional.
Instead, it has helped me manage living with this disease.
If any of those things (and the millions I tried) had had a positive effect, I would have pushed even further in that direction, and I WOULD BE WELL BY NOW.
After 25 years, I am just grateful that I don’t have some of the huge constellations of symptoms some CFS patients have, and the additional complications that they have suffered.
I am better – I am NOT anywhere near well. Or healthy. Or functional.
When a new situation in life happens – marriage, birth of children, loss of parent or spouse, ILLNESS – if there is time, the human will adjust, stop the things that don’t help, and increase the things that seem to help. This is what humans do.
I’ve maxed out – I can’t think of anything with a track record that helps enough people (excluding those that deal with SYMPTOMS I don’t have) that I would be willing to try that I haven’t already tried and discarded.
Improvement has always limited me to about 35% of the previous me – on a good day. Usually a lot less.
Instead, I live a quiet life, pushing for as much as I know I can deal with, ALWAYS finding out that if I overdo it I PAY.
I want a FULL cure. The REAL reason. To be found be real RESEARCHERS and CARING physicians.
I want what the AIDS patients got: HOPE.
Alicia
Well-said, Alicia. I am ‘only’ 8 years into this illness, but I can attest to everything you said. I tried yoga and Tai-Chi early on, but could not keep it up. It’s a constant choice between the devil and the deep blue sea what I am allowed to do…and, yes, there are always consequences.
I am right there with you!
Struggling to become minimally functional, while avoiding the backlash that my body unleashes for going even one toe over that invisible line of what I can handle has been my life for 11 years. I too have tried everything I possibly could, including CBT/GET (the GET has knocked me on my ass each time I’ve tried it, and, yes, I’ve been desperate enough to try it several times), only to get to the point where I could “minimally manage” this illness.
Andrew Lloyd has just lost all credibility with me!
Amen, Alicia!
Hey Cort, This is such a hot topic to cover for our devastating illness, to me its always been like a doctor telling a patient with cancer to try GET/CBT, just absurd. I have tried GET, and it resulted in a 3 month crash. I really don’t need someone to tell me (CBT) how to live with this illness, its insulting to have people suggests these options without first giving us a real treatment. Just a suggestion on your voting page, if we can vote that GET/CBT made us better, we should be able to vote if it made a worse. Saying no significant difference would mean it didn’t hurt us. Thanks for your hard work.
Thanks Walking Dead
I had the “made me worse” option on there for CBT but I accidentally had GET improved me twice. I fixed it and the made me worse option is now there.
Hi Court
I noticed your comment that Lloyd has no hand in CBT. That’s not quite correct. He is in collaboration with the fatigue clinic at the university of NSW – an undeclared conflict of interest one would have thought:
This is more than a puff piece by Lloyd. It’s a cheer squad for White et al and CBT/GET because he has a pecuniary interest that he fails to mention. Very Wessely-like don’t you think?
Andrew Lloyd is involved with the ‘Fatigue Clinic’ in Sydney: https://medicalsciences.med.unsw.edu.au/community/lifestyle-clinic/services/fatigue-clinic
Unfortunately that’s the only mainstream treatment commonly recommended by GP’s in Sydney. Sometimes I think about accepting a referral just to get my GP off my back about why I won’t go there. There are those that will sing the clinic’s praises and others that might tell cautionary tales about the dangers of CBT/GET. I’ve heard some say that the clinic might be beneficial if you’re in the early stages or are mildly affected and need help adjusting. Interestingly I’ve heard that people were told if they were too sick to exercise in the program or told they would need to substantially reduce their activity level in order to stop the push-crash cycle so they could do the exercises without PEM. On the surface it appears that they don’t want to push people which is a plus I guess. Just wish they weren’t the only game in town here or that doctors would find something on google or read a journal that didn’t have the magic words of CBT/GET as cure-all’s. I wish Lloyd did have his early fervour, I’d go see him in a heartbeat if he wasn’t writing disappointing stuff like this now.
I’m glad that Lloyd is getting results -that’s probably why he wrote the op-ed. I’m also glad that he’s adopted a personalized approach to exercise -that’s very important. My question is whether CBT/GET is what we should be celebrating in 2015….
Cort, first of all, I want to thank you for your diligent and comprehensive coverage of current research. It helps keep me sane. I don’t like whitewash…we’ve had enough of that…I want to know the good, the bad, and the ugly of a situation. THAT is truly being informed. Secondly, I think we DESPERATELY need a biomarker test with some reliability before we can truly determine whether treatment strategies are successful. I have cringed more than once at so-called reports of curing CFS with B-12 (for example). Pa-leeze!! If B-12 cured you, you had a B-12 deficiency, and not CFS. I agree with the IOM’s formal declaration that Post-Exertional Malaise (PEM) is a hallmark symptom. GET and CBT flies in the face of that. Concerned with my rapid physical decline early on, I tried yoga then Tai-Chi. Just once a week cost me the rest of the week, and I had to give it up.
A forced-to-retire workaholic elementary educator, I started actively researching my illness when I realized local doctors did not have answers for me. L o n g story short, I self-diagnosed about 9 months in. My PCP told me pointedly that he did not believe in CFS. He did doggedly pursue answers…all tests reported me well. About 4 years ago (4 years in), I asked him to refer me to Dr. Lapp at Hunter-Hopkins. He declined because he was not familiar with the clinic. I always have a Plan B ready, so I then asked for a referral to Dr. Montoya at Stanford. Instant recognition and validation…and a referral. Although I live only 3 1/2 hours from Charlotte and have a brother who lives there, I am traveling cross-country to attempt to get better. (No small feat for someone who is energy-depleted.) Two pages of tests later and a wait time of 4 years (thankfully shortened to 2), a friend and I traveled cross-county last August for my first appointment. Thirteen blood tests later, I am prescribed acyclovir. I had a period of brief success…two glorious days I actually felt like my old self. Sadly, it did not last…perhaps because of taking care of my elderly mother who had surgery and a stay in the nursing home and my own bird-set-free actions. I did try to pace, but not that diligently, in retrospect. HUGE crash after the holidays…depression…calls and emails to Stanford…I began a new protocol of low-dose naltrexone and valacyclovir in March. VERY slowly, I am seeing progress again. I will definitely temper my urges to overdo this time…basically, because I have no other options available to me and I will take ANY improvement.
So…what do I know? I know that my problems started/came to a head on December 21, 2007, when I woke up with Bell’s Palsy brought on by EBV. I know that my former life died. I know that the essence of ME is still inside me, imprisoned by the insidious ME/CFS/SEID. I know that antivirals..and a boatload of supplements (not suggested by any medical professional) are helping me. Do I have ME/CFS/SEID? I think so. Dr. Montoya thinks so. My PCP is coming around. But, we don’t KNOW. We NEED those biomarkers!
Again, thanks for helping me stay on top of things. Your contribution to this cause and those who suffer from it is immeasurable. As for Andrew Lloyd…like you, I’m confused. I’m sure you will find out what is going on and let us know. We definitely do not need a champion turned naysayer at this crucial time.
Hi Cort. You have so many questions for Andrew Lloyd that I wonder if you have tried to contact him with those questions?
No I haven’t but I am now.
I’ve had a huge QOL increase from strength training
Many of my symptoms I thought were Cfs symptoms were actually caused by profound muscle weakness. CFS caused the weakness due to misuse. I still can’t really exercise without meds, but with them things usually work pretty well. Before exercise I take 10-20mg of ritalin and/or to 0.1g marijuana in vaporizer. (daily dose for each marijuana 0.1g, ritalin 10-30mg)
Any crashes I have don’t appear to be related to my exercise levels. This seems to make me an oddity in the CFS world… Is it my medications that make the difference? Or I just extremely lucky? Would love to hear if anyone on the same meds has similiar/opposing experiences
Interesting pre-exercise combo Ian! I think that short bursts of strength training are probably a pretty good idea if you can handle it. I’ve heard that’s the way to go.
Again I’m not against that stuff. I just don’t think it should be the only option.
Has it helped with aerobic ability – can you get around – go on walks more?
Yep it does I had dizziness, muscle weakness and pain mixed together
Now that most of the muscle weakness is gone it seems my problem is just with my brain and some pain
What’s interesting about the exercise is sometimes I just feel like garbage and when I start it is very hard. I feel like a car stuck in first gear… I’m pushing myself too hard… But after 5-10min I can get a burst of energy at which I can exercise with a fairly normally heart rate (130bps+). Sometimes this energy even lasts until the end of the day
Ritalin and marijuana do certainly help me go for walks. They don’t work all the time but in general the result is quite positive. I have many experiences of taking a few puffs from my vaporizer and then just suddenly doing doing jumping Jacks, running on the spot, or dancing or something because I have so much energy. It’s so amazing to the have the taste of feeling normal again 😀
And again that’s the thing. Without my meds I usually can’t exercise. My heart beat doesn’t increase and I just feel dizzy… They’ve made such a huge difference for me
I expect we’ll see more of this kind of op-ed, a back-lash; the pro-psycho basis for ME/CFS camp has spent careers on this and a whole lot of money and it’s a natural human response to dig in and protect yourself and your livelihood. People who are editors and publishers of journals are compelled to “present both sides” of an issue (as if there are just two!), so they give voice to dissenters–dissenters with a pedigree especially. So who will write a response back who will be published? Cort? Sarah Myhill? IACFSME? Our new champion Ellen Wright Clayton? I hope someone with publishable chops will.
Also, as much as publishers want to think they’re a check on gov’t, they also run in the same social circles and they have some pride in their own countries. It is not hard to imagine a country feeling embarrassed by their approach getting trashed in the international press and hoping to place a contrary voice in a prominent journal, especially after a lunch with someone high up in gov’t where the ostensible stakes are a completely different subject. “Sure we can publish that, no big deal.”
Tthough WE well know that their premise was inaccurate, to be fair I think that many mental health practitioners have meant well with prescribing CBT and GET. Just think of it, if you were applying CBT and GET to a population of people your gov’t’s diagnostic criteria (falsely) regards as sick with this illness and you see them improve by these treatments, you’d be very happy for the patient and pleased to have offered much needed help. We all want to feel that way about our work. You’d want to spread that (falsely) good news, defend it. But those of us with this illness, defined by PEM, are a different patient population; that approach is not good news for us. It is right for us to object. Yet it may also be helpful to give them kudos for figuring out a way to help others who suffer from fatigue as a symptom of illnesses other than what we have. If we can keep that difference–that sincere has shown that we’re talking apples and oranges–front and center then it takes the argument away from a binary psycho- vs. bio-organic cause. It will be harder for people resurrect that argument.
Thanks Cort- I read the op-ed by Lloyd and have been wondering
what happened to Andrew Llyod- cutting edge stuff in the Dubbo trial to rehashing old and discredited trials into CBT/GET?
Feels like interstate riveraly at ts worst, NSW published this op-ed at the same time QLD researchers; published their ground breaking findings of genetic problems in patients ion channels as being part of the ME/CFS pathophysiogy.
Lloyd could do great work at his fatigue clinic by trailing the work of of Dr. Nancy Klimas – her safe exercise program is endorsed by many patients who find it helps reduce the double whammy of de-conditioning and ME/CFS (SEID). Noting that, in order to even partake, in a heart rate based micro exercise program, many patients have too initially severely limit their everyday activities
.
Cort
Thank you for the thorough analysis! Really well done. Those with CFS know their physical symptoms. Lloyd has gone off the farm. CBT didn’t really help psychiatry until medications roiled out. Separately, progressive MS is still in the dark with little progressive. The MS Society states 50% of all MS patients have a mood issue due to brain damage or over consequences of the illness.
I appreciate your investigative work here. I guess the question becomes why are the Brits SO focused on saving face instead of investing real money into a real disease that needs money to find treatments. Discoveries are happening in the U.S a little on the private side. But the question becomes; what is it that drives the U.S. and Britian to thwart real money and grants to finding a serious illnesses needed treatments. Does anyone have a reasonable explanation? As the private sector incrementally finds physical anomalies pushing our government to face reality. Why do Governments waste so much time on covering up real science. Money can be found for ME. The game must end. :).
I throw out to the community- what can we do to stop this or rather start real funding.
A dollar a donor worldwide would add up to 17mm. We should have a community drive for each patient to fund a minimum of a dollar and give it to the most advance researchers? Just a thought. It takes a village! 🙂
Mike,
This is a wonderful idea! I think the challenge is getting someone to help our patient community organize and manage something like this. Most of us here are too incapacitated to follow through and maintain this type of endeavor. Lots of talent and abilities here but just too sick most of the time. Maybe a “well” person will come across this and have the ability to help us. Just imagine all the ” meaningful” research that could be funded under the patient community direction and funding with no outside influence from drug companies, special interest groups and governmental agencies. WE the patients would find the cause and the cure.
I can’t figure out how to vote as a guest. Do I have to join the discussion page in order to vote?
Yes, I’m afraid you have to register in the forums to vote. However, it’s a quick process and you’ll have access to upcoming polls – of which there will be many.
I congratulate you Cort on your exposé of Professor Lloyd’s simplistic voice on many key matters. Lloyd’s rigour has declined, and it is a timely critique on opinions that are not widely held, such that they do not take hold by those most eager to use them for other more negative purposes.
The Australian Guidelines, primarily authored by Lloyd, are now old and outdated, and hence, I believe that it is an imperative that this Editorial is not viewed as an update to these, especially as the Federal Government and Health Department in Australia is unlikely to finance new ones.
Lloyd’s errors of omission are blatant, and are difficult to explain. This is not true science, and his words cannot be viewed as authoritative, and certainly do not represent advances, especially when so much excellent and paradigm shifting work is now emerging from Griffith University here in Queensland.
Thanks…
I wonder what Griffiths was thinking when they saw their fellow Aussie researcher stating there’s no convincing evidence of NK cell dysfunction – a major research thrust for them.
The overstating of the extent of clinical trials in ME/CFS was equally bothersome. I can’t get over Lloyd saying that. That statement was clearly a setup to promote CBT/GET as the only therapy of choice for ME/CFS. I don’t mind CBT/GET if done properly but it shouldn’t be promoted as the only treatment possibility for ME/CFS and that’s what Lloyd essentially did.
I do mindfulness stuff – I like it- but to be honest the KPAX immune formula is more powerful for me than any mindfulness stuff I’ve ever done.
Thanks for your comprehensive response to the op ed. While I agree with it and am as unimpressed as you are with the article, never underestimate Lloyd. I can’t explain why he focused exclusively on This GET/ CBT waffle. It is strange that he did not expand to include his new research agenda in point 2
“1 It’s now clear that pathogens can trigger ME/CFS
2 Brain imagining studies implicate the brain as the center of pathophysiology in ME/CFS
3 Mood disorders and sleep disorders provide the basis for treatments
4 Cognitive behavioral therapy (CBT) and graded exercise therapy (GET) help patients manage their symptoms.”
You may not know (given your title “The Decline and Fall…” that Lloyd’s cutting- edge major research study is already underway, which builds on the exciting Japanese PET study into microglial activation in the brain. He told me a couple of weeks ago that it will be completed in 2 years.
I agree with Mel. As my son is his patient we are across this more personally and can offer some insight. He didn’t mention his fatigue clinic in the article but it is evidently important to him to maintain it. Hence his qualified support for GET. In the absence of any other reputable and, in our experience, safe treatment centre in NSW and having experienced the clinic and years of support from him on activity pacing and management, I would support that. This does not put me in a philosophical GET / CBT camp. We need much, much more. Lloyd knows this.
To compare his research and services to the fledgling Griffith University is laughable. At this point they have produced zero assistance despite massive PR and media hype and raising false expectations about treatment at their recently opened clinic amongst the ME community. I await the presentation of their biomarker breakthrough next month with baited breath.
Thanks for your insights Claudia. It’s good to hear from someone who’s been at the clinic and experienced and it’s good to hear that you’ve gotten pretty good results.
And it’s good to hear that Lloyd is moving forward with the microglial activation studies. It’s baffling to me why a blog titled “Waiting for a Breakthrough” does so little to provide hope for a breakthrough. Lloyd does mention the brain findings but only very briefly. His assertion that these therapeutic approaches that have been around for quite awhile constitute real progress threw me for a loop. It did sound almost like he was giving up.
I disagree that CBT/GET are the only real possibilities for treatment however. They may be the best researched but many physicians use a wide variety of treatments. They’re not successful all the time or probably even most of the time but they are quite successful some of time. They’re using treatments that have not been validated by studies because no studies have been done or the wrong studies have been done.
Take Florinef – florinef failed in its study apparently because the wrong endpoints were used. A different endpoint would have produced a different result. Peter Rowe noted that florinef is enormously helpful in some of his patients. LLoyd’s op-ed, however, suggests nothing other that CBT/GET can be trusted.
Low dose naltrexone is another example. Only two small studies in fibromyalgia have been done – two small to really say anything – but some people have incredible results from LDN. An op ed that asserts that only treatments that have replicated in several clinical trials is an op ed that cuts out 90% of what doctors find helpful in treating ME/CFS.
I know people who have not improved on antivirals and people who have done great on them. I know one person who life was saved, I’m convinced, by antivirals. ME/CFS is littered with treatments that help some people very much…
Lloyd is an interesting mixture of cutting edge and conservative. The Dubbo studies were cutting edge but he’s very conservative in other areas.
Again I’m glad to hear that he’s moving forward. It would be great to have an op ed from him or something on the breakthroughs he sees that are possible in ME/CFS. Stuff like that is so helpful for patients.
I agree it would be great to hear Loyd talk about future treatment possibilities. He seems much more hopeful of late-strangely opposite to his apparent position in this article and he has also become much more cautious in the use of GET.
Last year LLoyd completed a longitudinal 7 year study into his fatigue clinic program, which he discussed with me, but I have not found any publication coming from that. My impression was that modest improvement was found in about one third of patients, with a similar number gaining not much and about another third gaining nothing with a very few who were slightly worse. I have personally heard of some people who have found benefit and others who were unimpressed, but no horror stories of relapses, which doesn’t surprise me, as it is so carefully individually tailored and conservative. Horror stories were responsible for people staying away from the program many years ago, when I understand it was run very differently. I imagine that each program around the world will differ depending on who is running it. The UK experience sounds worlds apart.
I guess Lloyd may think it’s pre-emptive to discuss the benefits he believes may come from his PET studies. But he is definitely ultra-conservative on all treatments such as you mention, which are not validated. He importantly considers GET/CBT ‘symptom mangement’ as in point 4 above. When I have run any ‘treatments’ past him, that is more than clear. We have had to go elsewhere for those.
I think it’s wise to keep our options open with this illness, especially when our options are so limited in NSW, and elsewhere, despite this disappointing article. I sincerely doubt that the obsession with GET/ CBT in some quarters will ultimately obstruct progress in the search for effective treatments.
Thanks Claudia. It was good to see Lloyd mention a personalized approach to GET in the op-ed and that he’s being cautious about implementing it. My sense is that this is a trend in exercise therapy – at least I hope it is..:)
Cort
Thank you for the excellent reporting. My comment is not to you Cort, but our community. We have 17mm ME patients world wide. A social media patient funded fundraiser asking a dollar from each patient would be a windfall for progressive funding. We all have a dollar to help research. Let’s think proactive. We can let Lloyd go off the farm. Humiliate the NIH and give our most leading researchers a lump sum. Then 6 months from now do the same. We need self reliance and cut the dies to the roadblocks in the U.S. and England.
1 or more per patient fund raiser.
Brilliant idea. Sometimes when people are asked to donate they don’t know how much to give if they’re on a limited income or give to other such organizations. That’s less than a cup of coffee! Yes, we can all do this, phenomenal idea. Crowd funding.
I AGREE!!!
Dear Cort,
I congratulate you on your excellent exposé of Lloyd’s recent BMJ Editorial. One hopes that it is never considered to be an authoritative, albeit condensed review of modern understandings in this field. Nor should it be seen as an update to the existing Australian Guidelines or have binding consequences. We in Australia are very proud of the exceptionally good work emerging from Griffith University, Queensland in recent years, none of which Lloyd mentions.
It is a shame that Professor Lloyd was commissioned to write this, as he might have produced a more balanced review, had this not been the case.
Worst thing I’ve ever done .went from moderate ME with some quality of life to being housebound and bedridden.Warning,do not try these “treatments”I shall regret it the rest of my life.
graded exercise therapy? Just brushing my teeth causes me to feel worse. Forget about any kind of exercise
Just finding my toothbrush and tooth paste makes me feel worse. At this time I rarely leave home and have experienced a weird lack of feeling from my lower derriere down my right leg. I have had to drag myself around in the past by my elbows. Seriously horrible. Looking back very funny with my sense of humour. I was stuck in bed and my heart was racing so I called an ambulance as I was alone at the time. Somehow I fell off the bed and could hear Tim the leader of paramedics saying keep talking Cindy. I figured I had a choice either try to get back up onto bed or use my elbows to reach front door. Just as I reached it I heard police and fire arrive after the ambulance. So I lunged for the door knob and fell out the door. The yard was full of emergency vehicles and neighbours and then my family arrived. My heart was racing away over 200 beats a minute and they cut the arm of my favourite pjs to get cuff on. What a night.
The ambulance drivers asked for a house key. We had become friends as I had averted an Alaska Hwy pileup one night and convinced Tim who needed immediate care and had control of the accident scene before anyone arrived. My sense of humour and knowledge of first aid came from early years as a Canadian Ski Patrol member, winter survival teacher and training as a wilderness first responder and search and rescue tracker. Long ago I was fitter than most people and highly trained as I worked in wilderness areas often alone. I also worked in labs. studying muscles, cells, and anatomy. Many of us with ME have lives prior to its appearance. Sadly some medical people only see the results of ME, CFS, FMS, POTS, Autonomic Failures, inability to exercise, and in my case deteriorating discs and the results of 5 car accidents. Now I can rarely type this well or make sense of anything. I use oxygen, medications and have ballooned up to 300lbs size 28 from 127 lbs and a size 7. I had to be fit as I was training to be the camera person in under Arctic ice studies in Northern Canada.
I wonder what it would be like to sample a large number of people without any signs of illness and follow their life journeys to see what the PET, fMRIs etc would find. Then do multiple variatable analysis on all the information, something like the male and female heart studies. Could we find crowd funding and volunteers for that kind of long term study? Before my accidents I had a great brain body mind and heart. Now well they have all taken a hit. I studied CBT at a California University for a course and found it very interesting but later when I had traumatic brain injuries it was useless. I am guessing that even though our brains are far more adaptable throughout our lives than most MDs thought they suffer dramatic change and it takes a while for new pathways to work and some may rarely be as versatile as a brain without any injury. Howard Hughes Medical Institute at Jenalia Farm location were doing brain studies with cooperative science. Lots of money and maybe a source of knowledge but I have lost touch with them after they set up the plans for research.
What happened to him? Seems like he failed, isn’t tenacious enough to stick with it until he succeeds, is embarrassed, and now moving on. Or maybe he needs more money and can get it in the CBT/ GET world. Or maybe he’s developing a brain disease which is confusing him. Or maybe he’s just bored and bowing out.
As far as I’m aware, the only treatment available to British sufferer’s of CFS is CBT therapy. There are not many treatment centres in this country and my experience has been that CBT does not work, although it may do for others.
Maybe the BMJ chose Lloyd because he ‘s recommending something that’s already in operation in Britain and this means they don’t have to find any further funding ? It is notoriously difficult to get anyone to take CFS seriously here and our health service is in crisis. No further funding will be available and Lloyd backs the BMJ’s programme.
I should also say ‘Thanks Cort’. You do a fantastic job, presenting ‘stuff’ in a way that is easy to understand. Where would we be without you 🙂
Thanks Lyn
My worst “crashes” occur after my most active periods …was not over doing it…it just appears to be the cycle of symptoms. I have had this disease for 35 years and can say that exercise or the lack thereof is in no way, no how the cause or the cure for this disease. Any “serious” scientist in search for the truth would never suggest such nonsense… but a lapdog to the existing system would!!! I can bet the PACE trial or any of the other useless excerise studies never factored in the patient’s length of illness or where each patient was in terms of baseline functionality at the time of the study let alone whether or not they had CFS/ME to begin with. Functionalitty varies widely from patient to patient and within each patient. Sadly, there is a giant push here in the USA to go the useless CBT/GET route…my doc is pushing this on his patients here in Arizona. Where is this push coming from?
WELL PUT.
Thankyou Bonnie.
Dr. Marcie Zinn left this comment in another section. I think it was intended for here:
It is a shame that so many are so focused on CFS/ME/SEID when it comes to cognitive behavior therapy, mood disorders, sleep disorders, etc.
CBT is but one type of therapy, and not suited for many people. I know of about 25 types of therapy, and there are more that I am not familiar with. To say that the CBT is the only type is the one size fits all mentality, which is not real life.
What is the therapy for? It can be for 2 things; first, to deal with the normal reactions people have to getting permanently sick, and 2) to perhaps help folks with some issues that were issues before they became ill; working on these issues would help the person feel better and be in a better place to conduct effective self-care.
Most diseases with neurological sequelae have “mood disorders” and “sleep disorders” as integral aspects of the diseases, so much so that treating these problems often do make the folks with the disease feel better. It is really unfortunate that we continue re-hashing these misnomers because it only takes us further from what really causes this class of diseases (CFS/ME/SEID).
I would like to see this end so we can get to the truth without the self-doubt of “missing” a “psychological” element when there is none.
Dr. Marcie Zinn
Well said!
Thanks James. I agree about everything but the last part about Lloyd- he’s not engaged in any CBT trials that I know of. (On the other hand I don’t know why he, a researcher did this op-ed. I assume he’s getting results in his clinic.) Lloyd has done excellent research. I agree, though, that there’s too many researchers tooting their own horns, overblowing their findings, and ignoring contrary evidence. That wasn’t the way I was taught: good researchers put contrary findings in their reports as well. That happens far too little now.
I wish these researchers would work together rather than competing. Dr Staines recommends doing 1/3 of what you think you can…Dr Lloyd recommends a personalized exercise program that often limits what people do. They both have vast experience with the immune system. So much in common!
The main difference I can see is that Dr Lloyd has a vested interest in the fatigue clinic, – which is well supported in the medical community.
Whereas my understanding of the NCNED clinic is that while they can’t offer treatments, they are building a client base that strictly meets the ME criteria (ICC) and very cautious about who they diagnose. Also i believe they are working in an environment generally hostile to anything other than a psychosomatic approach to ME/CFS.
At least that has been my experience with QLD health. There is a big crossover in staff between the GOLD Coast City Hospital and Griffith Medical School. (And only one pain consultant in GCCH while I was there – and psychiatrists coming out the walls)
I think the NCNED team are doing all their work against the prevailing winds.
Maybe Lloyds just decided to sail downhill?
If he and Dr Staines are recommending the same things – limiting activity – and both have established immune system abnormalities. He’s maybe trying to do it with the wind rather than against it. I know he has helped some patients, probably many patients, as has Dr Staines.
However I’m not excited by Lloyds ‘breakthrough ‘ in this article.
I AM excited by the Griffith teams latest work. My Allergist immunologist Dr Peter Smith has joined the team, he’s probably been the MOST helpful specialist at explaining some of my weirder symptoms (caused by over active mast cells – which explains many of what I call my instant symptoms) so I have confidence that this work is being done by people who really ‘get’ the severe complicated end of this disease, even if they are very limited in what they can do to help.
I think they are the only team taking blood from severely ill people. (Except maybe norweigens)
What we need is a blood test…that’s a real breakthrough and it seems to me that NCNED might just be the team to deliver it.
In the meantime I’ll keep at my heart-rate-safe exercise program, listen to Toni Bernards book on mindfulness while sick, avoid trigger chemicals and over stimulation…and hope for the winds to change!
Ps As for CBT, I understand even regular psychology is moving away from that and towards mindfulness.(?)
Pss
Some people do get better and I’d love to know what changes post recovery or post improvement. Is it the brain or the immune system or both? Which one leads? Is that the difference between Lloyd And Staines? One is concentrating on the brain the other the innate immune system?
I’d be interested to hear more about both.
Thanks for this great article Cort.
Great post Sarah – I love your approach 🙂
The big question is WHO commissioned Lloyd – the BMJ or perhaps even an Australian group???
Court
I think one of the most significant points you raise is the inability of good research to reach level 1 status (RCT’s, double blinded). The GET/CBT researchers not only cornered this research dollars – they controlled it. The psychs set themselves up on panels to dent the biological research. Apart from government dollars they had insurer money.
The vested interests behind this money produced the “evidence” in one area only. His views on other modalities is not researched. Zimm is 100% correct to say there are other options out there. There are at least half a dozen quality RCTs on acupuncture alone, not to mention massage and chiropractic.
Follow the money here with him and you will find he cornered government funds. He is following what benefits him and his team and his career. This is not about patients. It is about money.
Lloyd is a disgrace.
I’ve always had quite a lot of time for Lloyd. But for how much longer?
It almost seems as if he’s saying “well we haven’t found any authoritative explanation for CFS, thus it must all be in the head”
He’s hinting at depressive aspects, but this is a bit odd because his own earlier research suggested “hit and run” infectious causes lead to damage to the brain. “In the head” not in a depressive sense, but in terms of brain / CNS functioning. Has he given up on this route?
That would be a pity. I was with him. I think he’s right that it’s an illness caused by an infection – not one, but many possible infections – that damages the brain.
But I depart from him now if he thinks that damage amounts to “depression” or some variant of psychological illness.
We are seeing progress in research in CFS around the brain / CFS, and I think we’ll find the answer there soon.
He’s right on the immune system though. The findings are all over the place, and I’ve said here many times that the answer isn’t to be found there, although it’s obviously relevant.
Lloyd believes the answer is not depression – he actually says so in the piece – and I think he thinks it is the central nervous system and it is popped off by an infection and high cytokines levels early in the disease that damage something in the brain. His op ed “Waiting for a breakthrough” just dealt very peripherally with those topics, though. Most of it was on CBT and GET…
It’s a strange article coming from him. He is continuing his research – you just wouldn’t know it from this piece.
This is a typically well balanced and rational article .Cort where you attack/scrutinize his argument with rational arguments- maybe you could send him the article! I think invest in me invited him to their annual conference not that long ago- I wonder what they think about all this
Lloyd is being passed the article. I’ve asked him if he wants to rebut or explain anything or talk about his hopes for ME/CFS research. I meet Lloyd some years at the Symposium on Viruses. I really liked him – a very enjoyable guy.
I need to say “THANK YOU” Cort! I am not able to explain all the devestation this disease has brought into to my life, but i feel less alone & more informed thanks to you. I have tried CBT & it helps a little, but is NO magic bullet. It only helps me cope a little better with the enormous loss! Again, from the bottom of my heart, thank you for the little piece of sanity that your words bring to me.
Thank you!
ME TOO–FINDING YOUR BLOG HAS CHANGED MY LIFE. I ALSO MIGHT ADD THAT FINDING ”5-HTP, EXTRA SRENGTH” ON PRO HEALTH HAS MADE A HUGE DIFFERENCE TO HOW I FEEL WHEN I WAKE UP! THANK YOU, THANK YOU! (JUST DON’T START TAKING IT UNTIL ANY CHEMICAL ANTI-DEPRESSANTS R WELL OUT OF YOUR SYSTEM!) EVEN MY PSYCHIATRIST IS ALL FOR ME USING IT. SO FAR, SO GOOD.
Just because “they” — whoever they might be — are not finding evidence with their tests, does not mean that evidence is not there. They just don’t know what to look for, or how deep to dig, etc.
There’s an old saying:
Absence of proof is not proof of absence.
Absolutely applies here. They can’t find evidence. Does not mean evidence does not exist. It will turn up.
Thankfully no dr has reccommended get or cbt. All drs did for me was tell me what I don’t have then send me home and I still have no idea what I have. Took three yrs to get a diagnosis
I did GET and CBT. I get much, much, much more worse and ended up in a wheel chair and hart rate problems. And even though the therapist and doctor did not wanted to stop. They saw that it didn’t work and couldn’t believe it.
Cort, those of us in Sydney (Australia) who have known Dr Andrew Lloyd for a number of years and heard him speak dismissively and unprofessionally of bio-medical research into ME/CFS (such as the Rituximab trials) are not at all surprised by his latest op-ed. It’s not out of character. It’s true to form.
Yes
Lloyd is a disgrace his interest is totally money, his advice which my then Dr followed resulted in my having open-heart surgery, please note exercise is toxic for people with M.E g 93.3
I would like to know why a subgroup of CFS patiënts are getting ‘better’ with GET/CBT and why a subgroup getting much worse instead of discussing the neverending story that this therapy would be helpfull for everybody. By the way i have never seen any patiënt who was getting better after CBT or GET. Where are all the cured people? If it was true CFS wasn’t a problem we would all be happy after getting CBT or GET.
Thanks, Cort, for this article.
Best,
Willow
I know some people find they can do a tiny bit of aerobic activity with a use of a heart monitor and some can do weights which doesn’t use the aerobic pathway but even adapted activity ignores those of us severely affected bedridden 24/7. I saw Klimas advocate using weights in bed for those bedridden. This is way too much for me and even two lifts pushes me into Neuro immune exhaustion.
The severely affected are often regularly ignored or barely mentioned in any discussions of this illness by medical professionals. I am so pleased the Open Medicine foundation are studying the severely affected
And did you know that the CDC, of all places, has now included them – probably at great cost – in their multisite ME/CFS experts study?
No, I didn’t. Great to hear
“Criticism may not be agreeable, but it is necessary. It fulfils the same function as pain in the human body. It calls attention to an unhealthy state of things.”
Winston Churchill was like a quote machine 🙂
Good piece Cort, & timely. Clearly the BMJ editorial is part of the pushback against P2P and IOM devaluation of British psychiatric group tenets, as well as pushback against the thousands of reports of scientific research which reflects accurately the overwhelmingly obvious biomedical basis for ME.
Thinking about the UK psychiatric group’s success in maintaining support from UK judiciary and press, in spite of all evidence from reality, it strikes me that the UK retains respect for hierarchy to a degree that is quite alien to Americans.
Thus, a UK judge or journalist (qua BMJ editor) viewing the psychiatric school sees top-ranked professors at prestigious UK institutions, each with a degree from Oxbridge certifying white male establishment credentials. They see professors who occupy seats on prestigious councils, collect innumerable bibliographic references in highly ranked publications, and have even procured Queen’s honours.
This is the dysfunctional theme in British culture that brought down British industry, British science, and British engineering over the course of the 20th century. Wessely and White shrewdly perceived and manipulated the nation’s politico-medical environment in the context of this theme, and have won themselves fame and fortune as a result. Their stranglehold seems likely to continue for the rest of their careers, and so Britain loses even more massive amounts of human achievement and productivity in consequence.
(Not intended to forget the destruction their theories — shrewdly publicized, however daft — wreak throughout the world, and especially across northern Europe.)
Wessely and White shall go down in history as having contributed significantly to the transformation of Great Britain into little England, having inflicted a final, critical blow to Nye Bevan and Clem Attlee’s dreams for the National Health Service (NHS) as part of a Britain that would, finally, be fair to the common man or woman.
CBT/GET does actually have the potential to be very useful in the diagnosis of ME:
As the majority of people with ME would not have been able to attend for either the trials or treatments, and; ME/CFS is now being rebranded as SEID–emphasising the key post exertional malaise–: Anyone who improves after a course/test of CBT/GET clearly DOES NOT HAVE ME.
Future ME research should therefore be concentrated on those who fail to improve or be able to take part in, or even turn up for, CBT/GET.
In the UK the ‘therapists’ have in effect, already sorted out this cohort for study, because they actually do not allow people incapacitated by ME to be treated in their homes. It is plain fact that, in the UK, CBT/GET has never been tested on people with ME, nor offered as treatment for people with ME. They refuse point blank to have anything to do with us, because they KNOW they don’t really have anything to offer, and it makes them very uncomfortable when confronted with someone who really has ME.
It is very easy to check these facts: the BMJ could just try ringing a few practitioners or ‘clinics’ and asking them how many bed bound people they are helping. They could enquire how many studies there have ever been on bed bound people with ME. I’m pretty sure the answer on both counts would be close to zero.
Just make a list of people who have been rejected by CBT/GET ‘clinics’, and you will have a better cohort for study of ME than has been produced by any case definition to date.
I have to disagree with you on the point regarding CBT in the UK.
I attended the CFS/ME/SEID clinic in Wareham,Dorset,UK on 2 occasions as a patient of Dr Selwyn Richards. The only treatment offered and available to patients with CFS is Cognitive Behaviour Therapy. The course lasts for 12 weeks in a group situation, however one to one therapy is also offered if patients have problems being in groups of people.
I couldn’t cope with the group situation and tried one to one therapy.
I can’t comment on how other UK centres operate.
Here’s a link explaining the services available in Dorset,UK.
http://www.dorsethealthcare.nhs.uk/services/dorset-wide/cfs-me.htm
We are very lucky to have this facility.
@steve hawkins
Agree! very funny
Imagine the outcry, if cancer research was only carried out on people who didn’t have tumours: the cardinal presentation of the disease.
Why is it, then, allowed, to squander ME research money only on people who don’t actually have it?
The whole thing is an exercise in futility and even charlatanism.
Two good pieces of information on the Andrew Lloyd front.
He’s heading up a big post-infectious disease study – the Dubbo studies are continuing
He’s heading up a microglial activation/brain inflammation study
🙂
That is surprising, given his op-ed!
If Lloyd could align with Dr. Klimas and the Christopher Snell, Staci Stevens approach, he might be a more useful guy.
Thanks for an article so full of surprises.
Sarah
Lloyd versus Snell and Stevens: worlds apart. Lloyd’s box is too small to encompass anything as practical as living in the real world. This idea is a non-starter
Another researcher scared off by the military hanging on to the cover up, and keeping this perfect biological weapon still undetectable, untreatable and as debilitating as ever, I don’t blame people. I’m just as afraid to talk about the medicine that keeps my brain fog at bay for the same fear of whatever governments developed this. Good luck and god bless to all. We’re gonna need it.
@Cort,
How about a future article about your your experiences with exercise & activity.
With an updated list of resources ( your previous one has a few dead links)
Regards
Sean
I think it is the BMJ the main problem here, they commisioned Lloyd to write the ad for their CBT/GET and they edited the article to some extent to make the points stand out that they wanted to and minmise those that don’t, maybe?
Either way what worries me, as I live in the Uk, is that this crap is being read by any doctor here, I thought we were past this crap by now, but they still carry on. Maybe it is their last defense
What is needed know is some one to write a well balanced informative article for the BMJ correcting countering lloyd’s article. Now I would love to do it myself but I am way too out of it in too many ways to do this. Anyone?
I agree with Cort that it is the dismissing of the good research recently in ME/CFS that bothers me in the article, we need to put that right and list some of the recent research findings.
In the UK the saying the doctors are only as good as the info they are given holds true. But if they are given good, upto date info of recent studies in the BMJ that will also hold true!
Also the BMJ themselves need educating as they have an extraordinary editorial bias over the years to psychosocial type causes and treatments. Yes they are bloody ignorant so maybe they just need enlightening?
Prof Kerr already gave quite a good reply to the piece. Look at the rapid responses.
The BMJ is actually good for publishing responses with no messing about. No matter how much I suggest other people respond to these misinformed pieces, though, I’m often the only one who does. If few people try to put them right, we only have ourselves to blame, when the other side has it all their own way.
Throughout my treatment process for CFS, I’ve done physical therapy on two separate occasions for two months each.
Every time, I left the therapists office in more pain, in a larger area, than when I entered. Worse and worse each time. No wonder why I stopped going.
Any attempts at very minimal strength training since my CFS symptoms began have ended with me practically bedridden for months afterward.
Last time I tried strength exercise was 2 months ago; 1 set each of various upper body exercises with 5 pound weights.
For the last two months since, I have been unable to function.
And I’m not the only one.
http://www.ncf-net.org/library/Reporting%20of%20Harms.pdf
This meta-study looked at self report surveys asking CFS patients if GET helped them, or harmed them. 50% of respondents said GET helped them improve… But a whole other 50% said they felt graded exercise HARMED them.
Writing all CFS patients off to physical therapy programs is dangerous and irresponsible, and the patients deserve better than that. At the very least, if you’re going to demand that CFS patients enlist in a physical therapy program, you better have some place in mind that specializes in CFS patients with results that you, personally, can attest to.
If there’s one thing that people who have actually read the medical literature on CFS can agree on, it’s that there is no “one size fits all” approach.
Hear hear
I’ve never seen Dr. John so active on the site :))