Friedberg et al: Efficacy of two delivery modes of behavioral self-management in severe CFS

[K22]

As someone who is severe, probably way too severe to qualify for this study, I value this research for highlighting that just expecting many of the severe to improve significantly through pacing well alone is unrealistic. This should therefore drive attempts to look for medical not management solutions which are still heavily favoured eg in the UK. This shows good pacing isn't often that transformative and the FINE trial shows that rehabilitation isn't either - the 2 things UK have focused on 2 decades. The authors probably hoped to prove the opposite but nonetheless... I vaguely recall a bespoke BPS management study is the next thing on the cards for the severe over here in UK ...

 

[A.B.]

No significant improvement was found at 12-month follow-up for the FSM:ACT or the FSM:CTR condition as compared to UC (p > .10)

If this form of self management was effective, patients would continue doing it in some form and one would see lasting improvements. That the improvement is only temporary suggests that the study is merely documenting the placebo effect.

Can we please accept that behavioural interventions are ineffective and move on?

 

[msf]

Seems like the psychobabble bullshitters don´t take the summer off, whereas the biomedical types (you know, actual scientists) do. What a pity that state of affairs isn´t reversed. I guess the real reason is you can come up with this bullshit whilst lying on the beach and reading your favourite Dan Brown novel.

 

[Bob]

Maybe a study of supportive care and the difference in quality of life it might make for us?

For example, do people with moderate ME/CFS (ICC or CCC criteria, please) have better QoL when given support workers to help with chores, cleaning, driving to doctor appts, etc?

Perhaps a study highlighting what PwME must give up in order to have the physical strength and energy just to get through the day if we have to see a doctor or do other 'extra' tasks on a particular day.

it's just that it seems to me that this sort of study would be far more helpful to us than attempted behavior modification, which, as the study highlighted in this thread seems to have proved does not work.

I totally support these suggestions/observations.

@Sean once made a great suggestion that instead of investigating all of the useless behavioural interventions, there should be a study where (instead of paying for therapists for behavioural interventions) money is distributed to ME patients to use as they see fit to improve their lives (e.g. for home modifications, transport, social/personal support, cleaners, etc), and then the quality of life assessed after six months. I'm sure that would be a much more effective intervention than CBT/GET etc. Actually, i can't think of a better use of research resources (other than biomedical research, of course) if we have to have these behavioural research projects. I imagine that such a project might have a very positive outcome for many of us, in terms of quality of life indicators.

 

[taniaaust1]

So this study likely includes people suffering from illnesses other than ME/CFS.

Oh wait... they have a note, so we can just assume a correct diagnosis of ME/CFS.

lol yeah obviously a note from a doctor who may not understand the illness at all and may not know how its diagnosed, vertifies you have ME/CFS now.
.....

Can someone please teach this guy Fred what severe ME actually is? I personally dont know many severe ME patients who go out for walks. we have far more important things to be using our energy on. Why do they keep being in denial that most of us with severe ME are using wheelchairs (or if not are stuck in bed).

 

[Comet]

I totally support these suggestions/observations.

@Sean once made a great suggestion that instead of investigating all of the useless behavioural interventions, there should be a study where (instead of paying for therapists for behavioural interventions) money is distributed to ME patients to use as they see fit to improve their lives (e.g. for home modifications, transport, social/personal support, cleaners, etc), and then the quality of life assessed after six months. I'm sure that would be a much more effective intervention than CBT/GET etc. Actually, i can't think of a better use of research resources (other than biomedical research, of course) if we have to have these behavioural research projects. I imagine that such a project might have a very positive outcome for many of us, in terms of quality of life indicators.

This is a fabulous idea.

 

[Research 1st]

lol yeah obviously a note from a doctor who may not understand the illness at all and may not know how its diagnosed, verifies you have ME/CFS now.
.....

Can someone please teach this guy Fred what severe ME actually is? I personally dont know many severe ME patients who go out for walks. we have far more important things to be using our energy on. Why do they keep being in denial that most of us with severe ME are using wheelchairs (or if not are stuck in bed).

Good question taniaaust1, I would suggest the reason they don't know what severe ME is manifold, but it's actually quite simple, but takes a bit of explaining, please forgive me if this is long winded, but it's necessary to be detailed.


Most doctors, (influenced by official literature) genuinely believe in error, that ME is the same as CF, and thus severe ME must also still be a 'chronic fatigue' disorder. Thinking this, they believe behavioral intervention ideas are even more appropriate to the severe ME subsets, as patients are surely only severely affected, due to ''avoidance''. Some doctors also believe, parents can 'encourage' moderate patients to get into bed, and become 'severe', from deconditioning. Why?

Because of the way CFS is diagnosed, mentally disturbed CFS patients do exist; due to there being no diagnostic test, and the inclusion criteria is self reported, unexplained chronic fatigue, and 4 or more symptoms - this undeniably allows for 'functional somatizers' to be misdiagnosed with CFS and ME, but in small numbers addmitedly. Many general doctors don't think mentally ill patients diagnosed with CFS are misdiagnosed, they think the condition is (at least) partly psychological. Hence when they hear or see in person severe PWME (such as in hospital setting), their minds fall back into this way of thinking and the severe ME patient gets abused (neglected or co-erced to engage in therapies that relapse them and cause more suffering).


Negative influence on doctors towards PWME and severe ME isn't just by medical journals:

The misdiagnosed still get promoted in the media in miracle 'cured of ME' stories, but that's because of the agenda the press has against people diagnosed with ME (the press coined the derogatory terms Gay-Cancer and Gay Flu for HIV, and Yuppie Flu for ME). The press thus loves to promote people who leap into the sea, and their ME disappears along with their numerous ''confessions'' of a terribly stressful life as ballet dancer - promoting female/upper class myth of ME - again, suits the press agenda of stigmatizing the disease.

Doctors read these junk stories over coffee and toast, usually written in middle class 'intelligent' newspapers left on the family dining room table. Doctors are only human. Like all of us, they are influenced, and will read bizarre stories of 'cures', even subconsciously, they then have fresh doubt ME can ever be 100% physical because they keep hearing these stories in the press and formulate their own opinions about patients from them (General doctors, not ME CFS specialists). ME CFS specialists are influenced by the patients they meet in clinic, some of whom, will be 'cured' and will respond to CBT/GET in a matter of months (small number).


The PACE trial in the UK, demonstrated psychological therapy is ineffective for CFS, we know that the 'therapy' doesn't work well even in simple Chronic Fatigue with depression (F48.0 Oxford Criteria) which made up PACE participants.

However, all physicians have bias and if they hear back from some patients themselves, that CBT/GET 'works', then they will continue, genuinely thinking (in error) that psychiatric therapy treats physical diseases like ME, in which the patient has no active mental disorder (irrational thinking and physician self delusion).

Unlike in all other physical diseases, In ME CFS, it is presumed, that ALL patients with ME CFS, have this problem of 'avoidance' and 'fear' of activity, and this is the reason the severe patients remain disabled in some doctors opinions. (A form of disease denial, considering the thousands of biomedical CFS papers published over decades,and a form of ignorance, if they didn't bother reviewing the research to begin with (most likely!).


The severe patients cannot, or rarely attend a doctors office.

The physicians out there, specialist or otherwise, rarely or never get to see someone with severe ME. They thus won't recognize a severe grade patient, or if they did, may believe in error they are 'somatizing' or become 'stuck in rut', believing they are more sick, than moderate to mild patients due to errors in thinking they are 'more sick' than others. (Doctors can actually think like this). NB: Sometimes, it is actually true, but that's because there is no 'test' for either ME or CFS.


A severe ME sufferer, would usually avoid doctors who believe that CBT/GET helps treat 'severe' cases - arguably, a sensible decision!

It is sensible as there is no Scientific evidence behind the claim of CBT/GET, again, made by psychiatrists who deny that both CFS or ME are ever a chronic neurological disease state. This would be another reason they don't know what severe ME is!


So in summary, as so much time has passed and these people are in their 50's and 60's it's probably impossible to teach them now until novel 'groundbreaking' diagnostic tests are produced that demonstrate the difference on a biological basis between mild to severe cases, or indeed, separate them entirely, because they aren't the same illness. No one knows at this point in time, due to no biological research permitted in the severely affected, on a large scale government level. Even if this was permitted, it would still focus on Fatigue, rather than the core elements of severe ME (which then get patients removed from research studies).

*Orthostatic Intolerance - HALLMARK OF ME - not required for CFS diagnosis
*Post Exertional Relapse - HALLMARK OF ME - not required for CFS diagnosis
*Muscle weakness/pain at rest - HALLMARK OF ME - not required for CFS diagnosis.
*Chronic headache of new pattern or severity - OPTIONAL in CFS diagnosis.
*Cognitive Dysfunction - OPTIONAL in CFS diagnosis.

Looking above to the red text, that's a big problem if as a doctor, you think all cases of CFS are the same as ME if you ignore the hallmarks of ME, as ME is Fukuda CFS, isn't it?



An even bigger problem is the Invisibility of ME and severe ME in Biomedical Research:

The following conditions PREVENT you being part of a 'CFS' research study, because Fatigue IS explained in the conditions below:

Dysautonomia/POTS - common in ME
Pituitary gland dysfunction - common in ME
Arthritis - common in ME
Infection - common in ME
Allergies/Asthma - not uncommon in ME
Obese - explains fatigue. Chronic ME (decade+) appears to be associated with eventual weight gain as does....
Thyroid disease - not uncommon in ME
Sleep disorder - common in ME
Diabetes - not uncommon in ME.
PCOS in females
Autoimmune disease - Lupus etc *

Plus many more I have not listed due to brain fog/time constraints.

Ultimately, this is why we get no where and doctors have no idea what Severe ME is, because the CDC designed ME (CDC worked with input from British Psychiatrists) to be filtered out of research, and thus NO ROBUST OR EXTENSIVE EVIDENCE BASE EXISTS FOR SEVERE ME existing/

A rational consideration as to why Long Term Severe ME sufferers are so ill, is untreated young onset ME leads to the development of OTHER disorders in adulthood, over time, such as Autoimmune diseases. But to admit this, you have to admit ME is real, under biomedical researched, and not treatable AT ALL, because all you are treating is 'Fatigue',not the underlying autoimmunity/mitchondrial/metabolic /vascular/dysfunction.


Many people on this forum, are ME subsets of long term severe sick. They will contest to their disease worsening over time, OR the addition of OTHER conditions they develop in years or decades after initial diagnoses.


This is NOT considered with the authorities, or even mentioned in any literature (CDC, NHS etc). No influential CFS associated research body is considering or making part of a ME criteria the following, urgent thought:

What secondary conditions will my CFS ME patients develop in 20 years time?

It's much easier (lazy) to just think of ME as a spectrum of a ''Fatigue Syndrome'' and fob the patients off to 'other specialists who can deal with that' (e.g. Diabetes), rather than consider if one leads to the other and why these alleged mentally ill folk, have SO MANY THINGS WRONG WITH THEM OVER TIME, that weren't there when they first got diagnosed.

You are 0.01% of their time spent in clinical practice. As ME sufferers are almost always shoved in with non ME patients, THAT is why you are forgotten about in the community, because you need a specialist biomedical center to visit. They barely exist.

This is why severe ME has no voice, and people bedridden and housebound are seen as a 'minority' (25% of cases estimate) when we simply don't know if they have the same disease as others, due to no research being able to compare them against people more active and able.



We then have the additional problem of: SLOW ONSET Vs SUDDEN ONSET.


SUDDEN ONSET implies virus, but other PWME report they slowly decline, and then got a virus and became severely affected too. Thus, technically, the patient can have BOTH SLOW ONSET + SUDDEN ONSET!!!! Which one do they pick when asked?

No one is considering this, no one is allowing for this in management, or research, because no one tells the doctors what to doin an evidence based way for severe ME. The 'guidelines' are appalling, and based on CBT/GET/Pacing, lifestyle adjustments, not on considering your 'older ME CFS patient', and the way a disease changes over time.

On this basis, all combined above, ME and definitely severe ME can be made a 'Myth'' (As British Psychiatrists promote, whilst supporting the existence of CF) and the disease is wiped out of existence.


To fix this and bring ME and severe ME out of extinction, we need to abandon EXCLUSION based criteria (Fukuda CFS) and use INCLUSION based criteria, such as allowing the above conditions to be present in people with CFS and ME .

That logic, is still taboo.


Doctors and allied health care professionals skeptical of ME and severe ME, simply cannot get their head around the fact many PWCFS PWME have multiple illnesses and diseases all at once (thus proving it an underlying organic disease). So they ignore patients, and don't change the status quo.

The absence of severe ME researchers linked to large government grants is telling:


Initially, trying to change the status quo, risks getting you a low review score in research, and your research proposal unpublished. (As happened to Dr Kerr and countless other people).

Continuing to do this, gets you potentially banned from the University for 'causing trouble' or 'scaring CFS patients with ideas of untreatable chronic disease'.


We need a total mindset change, but people placed in control of ME as CF, won't change.


You can't change people in power, you need to replace them with new thinkers, younger generation.

Compare Jared Younger to Peter White for example, or Brian Wallit to Ron Davis - all are part of the 'CFS' research family, with completely different ideas and potentials to make effective positive change for the severely affected. Different mindsets leads to different research outcomes. With no appropriate biomedical research funding (should be billions of dollars), the severe grade patients remain very sick, and never have a productive independent life. Young researchers can see this who accept severe PWCFS and severe PWME are different to Fukuda CFS, and older researchers (who are parents of PWME) can see this as their own lives are wrecked having to care for the severely affected!!!!

It seems now the generation 2/3 teenagers with ME (young to middle age adults whose parents have ME, CFS, Lyme and whose family often have Autism, MS or other Autoimmune diseases) are approaching 30-50 years old, some younger people are considering if their ancestors in CFS and CFS/ME (British) research may have made a terrible and even deadly mistake through obsessing over mind-body theories and making this world wide health policy, via CDC. To think like that in 2016, when you know your research ancestors helped contribute towards it (harming patients) takes a lot of soul searching, bravery and ultimately, honesty.

Expect the first apologies from the new guard (on behalf of the retired) within the next few years, not that an apology reverses time lost, for some, nearly a life time and for others, an entire life time as they are deceased.

Severe ME 'management' based on 'Fatigue theories, said to be caused by your mind', entrapping severe grade patients in their homes by willful neglect of obvious profound disability, is our medical apartheid moment, and ours to react to, when the time comes, in a positive, legal manner.

 

[CFS_for_19_years]

I am not sure if this particular one paid participants, but the financial incentive is not worth another publication on behavioral interventions for ME and CFS.

This one paid patients. I was in their study, in the "usual care" group, which meant I kept an activity diary, wore an actometer several times, did a 6MWT several times where I utilized the hallway in my building. They did several phone interviews asking if I had been to the doctor since my last phone assessment, among other things. They paid well. I can't remember the exact amount, but it was over $100. I remember them saying they tried to make the amount similar to what subjects are paid to participate in other studies. Seeing as how this was a non-invasive study, the payment could have been made lower and I would have been happy with that.

At the end of the study they gave the instructional materials (papers and CD) to everyone in the usual care group. I haven't given a thought to actually looking at them.

 

[Keela Too]

Doctors read these junk stories over coffee and toast, usually written in middle class 'intelligent' newspapers left on the family dining room table. Doctors are only human. Like all of us, they are influenced, and will read bizarre stories of 'cures', even subconsciously, they then have fresh doubt ME can ever be 100% physical because they keep hearing these stories in the press and formulate their own opinions about patients from them (General doctors, not ME CFS specialists). .

YES! This is so true... and as you say the stories keep getting printed!

I had a grumble about this myself recently: http://sallyjustme.blogspot.co.uk/2016/07/recovery-determination.html

 

[dreampop]

I'm not even mad psychologists study CFS, that's fine, but at least through a chronic illness control group in there - you'll get the same results.

 

[mango]

Just a reminder that Friedberg is the president of IACFS/ME, known for their -- in my opinion, very helpful -- ME/CFS Primer for Clinical Practitioners (which is biomedical, not psych), medical conferences etc.

I can't help thinking (wishing?) that Friedberg should know better than this...

 

[Esther12]

Just a reminder that Friedberg is the president of IACFS/ME, known for their -- in my opinion, very helpful -- ME/CFS Primer for Clinical Practitioners (which is biomedical, not psych), medical conferences etc.

I can't help thinking (wishing?) that Friedberg should know better than this...

It is hard to do good CFS research. We may prefer to have research going into trying to identify the cause of ill-health but a lot of those in medicine want research to find a quick bit of 'management' advice that they can start giving to patients so that they feel less worthless when confronted with CFS.

 

[mango]

I am not sure if this particular one paid participants, but the financial incentive is not worth another publication on behavioral interventions for ME and CFS.

Candidates were offered up to $678 as compensation for full participation in the study.

 

[Kati]

I engaged in much much worse experiment, (clinical study) was given a meager stipend for my troubles, and have not recovered from that, and I am not likely to see my personal results.

Appaling

.

 

[Dr Speedy]

Patients with severe ME who can walk 336 meters in 6 mins; even the PACE trial wouldn't write that sort of nonsense

 

[CFS_for_19_years]

I believe this might be their definition of "severe" CFS?

The lower functioning in our CFS participants is also suggested by the short walk distances recorded on the 6MWT at baseline (mdn: 336 m)

I walked 457 meters in 2012 for this study. (Not doing quite as that well now.) I declined later requests to do one because it caused my calf pain to flare up.

Friedberg et al article said:
Candidates were offered up to $678 as compensation for full participation in the study.

I recall that payment was dependent upon participation in each of the various activities such as phone assessments, submitting a web diary entry, wearing an actometer for a week, doing a 6MWT, etc. Since I was in the usual care group, I didn't receive payment for participation in the instructional portion, but I was paid for data submission and phone assessments. The subjects who were paid the most would have completed all web diaries, worn an actometer when requested, done a 6MWT each time when requested, completed all phone assessments, and participated in the interventional portion.

For the first actometers, the strap for the waist wasn't big enough to comfortably accomodate my large waist without causing my back pain to flare up, so I wore it only that one time. I think they got larger straps for later actometer meters, but it was still too uncomfortable for me to have an elastic rubbing against my back. (I wear pants only a few hours a month.)

 

[cfs6691]

So, are they talking about the aural or anal routes of injection Bos Taurus faeces?


Earth to Muppets! Earth to Muppets! Come in, bioscocial Muppets!
Wasting time on this garbage with *SEVERELY ILL*, horribly distressed patients, instead of treatments to actual improve their primary medical condition is like forcing a cancer patient to listen to an IPod to "make them feel better" and deliberately denying them surgery, radiological or chemotherapy to stop them dying.

it's not merely "Nero fiddling while Rome burns"
It's like some terrorist loons are setting of atomic bombs and the biosocial, self obsessed assholes are going around pissing on the gigantic firestorms as cities burn and saying "Hey, look, we can put it out!"
Uh, no.

I cannot deal with that stuff myself but I think that it's a good idea that some of the others keep track of the nonsense.I had looked at all the titles of articles on CFS on PubMed from 1993 to January 1997 and out of 300 or so articles only about 10 were actual science,but I have been trying to keep it to myself what Simon Wessely was writing back then(neurasthenia revisited,old wine in new botlles blah blah blah) or Klein and Wareman( if my memory is correct )"CFS is a vehicule for change in intrapersonal relationships".There seems to be more science now although the psychobabble never dies.To think that those who write that stuff actually think that they are scientists or researchers makes me laugh.

 

[SilverbladeTE]

Grandstanding Ridiculous Opinionated Ignorant Numbnut S**heads, "GROINS" for short, have been a fact og Human Kind since the Caveman days
these jackassess are no different than the pontificating twerkbottoms who used to follow every theory Pharaoh's astrologer would come out with, and change their opinion to fit whatever was in vogue on a day to day basis, especially if it made them money and keep them in a "High social standing" while doing absolutely bugger all of any use.


Quite frankly I'd have every single one of those psychobabblers, the health insurance company execs, bureaucrats and politicians involved in all this given a choice:
you can either serve a full life sentence in jail in the GENERAL POPULATION, and make sure everyone knows who they are and why they are in jail
or
10 years cleaning up unexploded bombs the wars they supported left, or radioactive waste their support of nuclear weapons/fission supported, or the doctors can go join medicine sans frontiers and heal people in the worst situations.

I have NO SYMPATHY for these people what so ever.
it is one thing to be messed up or desperate and do bad things because of that and is thus often forgivable, even pitiable
or
to build something/do something vital that alas costs people injury and deaths (building the Hoover dam for example) and you can appreciate the hard choices that need to be made and accidents that alas always happen
but
to abuse, mock, make a living off denying millions of people medical and social aid is pure cold blooded *EVIL*

the "doctors" and scientists should never have been let off so easily at the end of World War 2, it set a bad precedent.

 

[Dolphin]

For anyone interested in the details, the "low-tech" group had pedometers and daily diaries. They sent back the results weekly. The "high-tech" group had actometers which didn't allow them to get feedback on how much activity they had done.

 

[Dolphin]

The mean baseline SF 36 physical functioning in this study was almost exactly the same as in the pace trial (37.9 versus 38.025). This is the 0 to 100 scale rather than the normalised score.