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BMJ: Updated 'clinical evidence' on treatment of ME/CFS (25 Sep 2015)

Chrisb

Senior Member
Messages
1,051
A possible answer to my questions "why this" and "why now" occurred to me in the middle of the night and managed to stay with me till morning. The advantage of my theory is that it is readily falsifiable within a short timeframe.

In about two months George Osborne will be delivering his autumn statement. It is widely expected that this will include further budget cuts to benefits. At the same time the DWP will issue paperwork giving details of alterations. I would expect that to include some reference to this paper "proving" the "efficacy" of CBT and GET and tightening the sanctions regime against those unable by reason of their ill health to attend for such therapy or who fail to improve after undergoing this "proven" therapy. After all, they must be malingering. It may be that Osborne and Smith have something else in mind. Your guess might be better than mine.

It may just be that I am being a little paranoid, but the timing of the issue of this paper seems appropriate, and the contents do not seem to say anything that hasn't been said before. It rather looks like a reduced version available for easy consumption by the gullible.

One wonders if it would be prudent to brief those MPs who are friendly towards us with the intent that one of them might raise issues in the ensuing debate. One wonders whether a question might also be put in an earlier session of Ministerial questions to try and fix the DWP to a half truth.

I fear that I am unable to participate constructively. I am no longer any good at either detail or activity. I apologise for seeming to suggest that others might undertake some action. We can all only do what we can do.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
this is revolting to say the least, and i'm not sure that a survey of M.E association members is even an appropriate response. Charities should be responding hard with in depth criticism of the PACE trial (plenty of it exists!) and an overview of recent biomedical trails and findings: Fluge and Mella, the Lights etc (sorry cant think of them all off the top of my head there are so many ;))

Chronic fatigue syndrome (CFS) is characterised by severe, disabling fatigue and other symptoms, including musculoskeletal pain, sleep disturbance, impaired concentration, and headaches
thiss description of my illness always makes me laugh - especially as I don't have much musculosketal pain, sleep disturbance or headaches, which just leaves me with...fatigue and impaired concentration :rofl: :bang-head::bang-head: - I might just bne a little tired or have overdone it in the nightclubs :rofl:
 

Chrisb

Senior Member
Messages
1,051
I may have diverted this thread from the direction others wished it to take. I shall try to put it back on course.

On looking again at the original document which was produced there seems to be an obvious difficulty over the terminology used in the abstract. Perhaps someone with knowledge of the academic protocols can clarify the matter. It would have seemed inappropriate in a different field. One would expect that an abstract should provide a fair and accurate representation of the information of which it purports to be an abstract. This is clearly not the case here.

There is a difficulty over the term "people with CFS". The well made criticisms of the Oxford or Fukuda criteria do not quite cover my point. There might be a case for saying that some people with CFS may benefit from the therapies (in which case one would need to define how many and who) but the natural implication is that all people with CFS, or any individual person with CFS, would benefit. I do not think there is any evidence which could be adduced capable of supporting this suggestion and, if there were, I would suspect that it was fraudulent. It is clear that no research has been conducted on the severely affected and the most favourable interpretation of what has been done on others shows only that a proportion of selected patients might benefit. The abstract clearly misstates the supporting evidence. This is what gives rise to my concern about the possible use to which this document could be put.

I do not doubt Wessely's intelligence and have no reason to doubt his grasp of linguistic nuance. I have no knowledge of the others. I am sure he would not wish such an error to go uncorrected. Nor should his publisher.

This group would do well to heed the words of another prominent researcher..."Given our present inability to cure patients with chronic fatigue syndrome we should treat what we know is treatable." It is hard to see how any particular patient can be said to be known to be treatable. The researcher? PD White in 1989.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
I think we should start planning a campaign to get Wessely and co. to issue an apology.

I'd prefer a campaign to get these greedy scum into a court of law. The more rubbish these fools keep publishing, the more they are building the evidence against them. Just like the sharks finally attacked the tobacco industry and won, eventually they will smell the bloody remains of psychobabble.

Sir Simon's gonna need a bigger boat.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
In about two months George Osborne will be delivering his autumn statement. It is widely expected that this will include further budget cuts to benefits. At the same time the DWP will issue paperwork giving details of alterations. I would expect that to include some reference to this paper "proving" the "efficacy" of CBT and GET and tightening the sanctions regime against those unable by reason of their ill health to attend for such therapy or who fail to improve after undergoing this "proven" therapy. After all, they must be malingering. It may be that Osborne and Smith have something else in mind. Your guess might be better than mine.

Yes, this is certainly the direction in both the UK and the US, where magic CBT can fix nearly everything. And like you said, if it doesn't work, it's the patient that failed, not the treatment.

It doesn't take a crystal ball to see that austerity will continue until large numbers of people quit quietly submitting. My crystal ball's taking a rest at the moment, but I don't see much resistance in the near future.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
There might be a case for saying that some people with CFS may benefit from the therapies (in which case one would need to define how many and who) but the natural implication is that all people with CFS, or any individual person with CFS, would benefit. I do not think there is any evidence which could be adduced capable of supporting this suggestion and, if there were, I would suspect that it was fraudulent.

This applies to so many medical treatments, one is hard pressed to think of them all. Two of the most egregious examples are SSRI antidepressants and statins. There is little evidence of efficacy, lots of evidence of harm, sometimes severe, and still the medical machine stamps out prescriptions for these drugs, by the millions.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
When it comes to ME as F48.0 CFS, the BMJ opinion makes good fish and chip paper, although it's hard to grip onto the food as it's so slippery.
 

Eeyore

Senior Member
Messages
595
This applies to so many medical treatments, one is hard pressed to think of them all. Two of the most egregious examples are SSRI antidepressants and statins.

I agree on all the Wesseley criticism and the absurdity of this paper. It's hardly new research - it rehashes old, worthless studies and adds nothing of value. Not surprising considering the author.

However, I would point out - and it's not that relevant to the thread - that we have stronger evidence for the effectiveness of statins than almost any other drug out there. It's been pretty well proven now that lowering cholesterol does not affect coronary disease risk, but statins DO reduce risk. This is based on very long, well controlled, very large studies. There are also very good studies that SSRI's are effective in depression. There is no sense in being anti-pharma.

I agree actually that we should treat those aspects of ME that can be treated (mostly symptoms), and they are probably right that very low dose TCA's help many patients (although they do not help me).
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
However, I would point out - and it's not that relevant to the thread - that we have stronger evidence for the effectiveness of statins than almost any other drug out there. It's been pretty well proven now that lowering cholesterol does not affect coronary disease risk, but statins DO reduce risk.

Reduces the risk of what?

thennt.com said:
http://www.thennt.com/nnt/statins-for-heart-disease-prevention-without-prior-heart-disease/

Benefits in NNT:
  • None were helped (life saved)
  • 1 in 104 were helped (preventing heart attack)
  • 1 in 154 were helped (preventing stroke)

Harms in NNH:
  • 1 in 100 were harmed (develop diabetes*)
  • 1 in 10 were harmed (muscle damage)


These data examine the effect of statins for people who have never before had a heart attack or stroke (most of the people who currently take statins). The effectiveness of the statins appears to be reproducible across studies in this group—they do lower cholesterol in most people who took them.

But very few people will avoid a heart attack or stroke by virtue of this change. It takes 5 years of daily statin therapy to achieve a 1.6% chance of avoiding a heart attack, and a 0.37% chance of avoiding a stroke. Most disappointing, statins seem unable to prevent death in this group. And most concerning, the drugs may increase diabetes, a serious and life-altering disease.

It won't save my life. One in ten chance of muscle damage. Sign me up for this one!
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Guys, if you can, have blood tests for endothelial inflammatory markers and lipids if you want to have an idea of your coronary risk.

None of these tests below are given to long term CFS ME sufferers and should be:

Community (home based) Diabetes monitoring - now in huge numbers.

Communiy (home based) Blood pressure and BMI monitoring to look for hypertension (chronic raised blood pressure is a silent killer = stroke).

Bloods:
Apolipoproteins
Fibrinogen and other clotting factors.
HS-CRP (This is raised in ME CFS research).
Triglycerides
HDL/LDL ratio
Oxidised LDL (Hard to get this test from most labs).
LP-PLA2 PLAC test - actual level of plaque enzyme present in blood, not theorised risk due to cholesterol level.

Scan:
Specialist CT scan of your heart to show your Coronary Artery Calcium Score.

Endocrine test:
Growth hormone levels (using a stimulation test if IGF-1 is normal) to check for adult growth hormone deficiency (mimics ME CFS symptoms and increases risk of adverse coronary events, such as raising lipids and increasing central obesity).

Compare the above, vs 'Updated Clinical Evidence on Treatment'. Notice there is ZERO talk of risk and how to monitor it - as this would expose the fraud of CBT GE BPS CFS and make ME a chronic inflammatory disease (which it is).

I know which I'd go for if I'd been housebound for years with chronic pain (inflammation), overweight, can't exercise and live off fat and sugar for energy = long term recipe for CHD risk increasing.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Just a little bit incestuous, would you say?
]

absolutely par for the course though with the British "system",
it's how the system keeps control: web of folk they can call favours from, alter reviews, deny problems, lose reports in bureaucratic black holes....

for example, look at the Chilcot Inquiry into the Iraq War, five years it's been delayed so far
 

Chrisb

Senior Member
Messages
1,051
There is good-quality evidence that both cognitive behavioural therapy (CBT) and graded exercise therapy are effective treatments for reducing fatigue and increasing functional capacity in people with CFS.

Is a correlative of this statement:

People for whom there is no good quality evidence that both cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are effective treatments for reducing fatigue and increasing functional capacity are not suffering from CFS?

I wonder whether anyone could provide a name for such a condition. It might not need to be a new name.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
A good quality journal can do a 5 minute search on 'ME CFS' biomedical research in a coffee break, and come up with these papers and use them as evidence the patients are seriously organically ill:

Impaired oxygen delivery to muscle in chronic fatigue syndrome.

Abnormalities of AMPK activation and glucose uptake in cultured skeletal muscle cells from individuals withchronic fatigue syndrome.

Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T (1)H MRS imaging study.

Plasma IL-6, its soluble receptors and F2-isoprostanes at rest and during exercise in chronic fatigue syndrome.

B-Lymphocyte Depletion in Myalgic Encephalopathy/ Chronic Fatigue Syndrome. An Open-Label Phase II Study with Rituximab Maintenance Treatment.


Frequent IgG subclass and mannose binding lectin deficiency in patients with chronic fatigue syndrome.

Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome.

Acetylcholine mediated vasodilatation in the microcirculation of patients with chronic fatigue syndrome.

Pilot Study of Natural Killer Cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Sclerosis.

Right arcuate fasciculus abnormality in chronic fatigue syndrome.

Brain Derived Neurotrophic Factor is Decreased in Chronic Fatigue Syndrome and Multiple Sclerosis


Longitudinal analysis of immune abnormalities in varying severities of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis patients.

Deficient EBV-specific B- and T-cell response in patients with chronic fatigue syndrome.


Yet somehow, that doesn't seem possible to mention in relation to 'clinical evidence' that backs a pro psychiatric approach?

What a peculiar set up.