• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Professor Martin Pall's Response to Wessely et al, J Roy Soc Med paper

barbc56

Senior Member
Messages
3,657
While I would dispute the motives Wessely attributes to people who claim to have mcs and electromagnetic sensitivities, these conditions do not exist. There are numerous studies that back this statement.

Why do I mention the above? Not to necessarily get into a debate about MCS and EMS but to show that since these conditions are not recognized by medical science, this puts less credibility on Martin Pall and is possibly why his letter was rejected.

It seems people, IMHO, are way too quick to find any criticism of Wessley. When we pick on everything Wessely does, it's like the boy who cried wolf. People will dismiss any of our points. We need to prioritize our criticism and maybe this topic is one of those priorities, I don't know. I am not a defender of Wessely s work but at what point do we start getting diminishing returns when we criticize him?

Can we access Wessely's full paper? I would feel more comfortable about expressing my opinions after getting as much information as possible. My opinions are flexible depending on what data is available.

If anyone is interested in some of the science the following is a good source of information. I will add more if/when I have the energy.

Numerous studies and systematic reviews have been done; they are summarized in a Wikipedia article. Just to give one example, a systematic review published in Psychosomatic Medicine in 2006 analyzed 31 double blind studies comparing real radiation to sham radiation. Patients couldn’t tell the difference. 24 of the studies found no effect, 7 reported “some” supporting evidence (2 of which could not be replicated on subsequent trials by the same researchers), 3 were false positives attributed to statistical artefacts, and the final 2 had mutually incompatible results. They concluded:
The symptoms described by “electromagnetic hypersensitivity” sufferers can be severe and are sometimes disabling. However, it has proved difficult to show under blind conditions that exposure to EMF can trigger these symptoms. This suggests that “electromagnetic hypersensitivity” is unrelated to the presence of EMF.
Patients who think they are suffering from EMF exposure are suffering, but not from EMF. The suffering is real, but the cause is not what they think, and treatments based on illusory causes are not likely to help except through placebo effects.

http://www.sciencebasedmedicine.org...-health-effects-of-electromagnetic-radiation/
Barb
 

barbc56

Senior Member
Messages
3,657
Wessely is the senior academic on the paper which seems utterly ridiculous the tone is deserving. I've heard and read much more insulting remarks in seminars and in academic papers.

I would have thought that the journal editor should be concerned on being told that a paper in his journal was missing references that disagreed with the argument that the authors and therefore is misleading. He should be looking to ensure the accuracy of what is in the journal. If he didn't like the tone of the letter i'm sure he could ask for a redrafting of it. Editors should have a duty to ensure the accuracy of papers in their journal.

This may have very well happened. We are assuming it didn't. We just don't know.

Barb C.
 
Messages
646
Wessely is the senior academic on the paper which seems utterly ridiculous the tone is deserving. I've heard and read much more insulting remarks in seminars and in academic papers.
Yes but the allowance of such remarks is in the hands of the editor. The 'it happens elsewhere' argument isn't very compelling and an editot looking for a reason not to publish, is being handed an easy opt out with what looks like an appeal ad hominem fallacy.
I would have thought that the journal editor should be concerned on being told that a paper in his journal was missing references that disagreed with the argument that the authors and therefore is misleading. He should be looking to ensure the accuracy of what is in the journal. If he didn't like the tone of the letter i'm sure he could ask for a redrafting of it. Editors should have a duty to ensure the accuracy of papers in their journal.
Is Pall's work really that compelling ? I can't access the reference list in the article but if the Boyd,Rubin & Wessely give broad reference base then does the ommission of Pall's study amount the article being misleading ? I'm guessing this earlier offering from Rubin and Wessely was referenced: Multiple chemical sensitivities: A systematic review of provocation studies , and that therefore the preponderance of relevant studies would be seen as outweighing any need to reference Pall's unreplicated work.

Again I'm not defending the JRSM article - at best it's a basis for a half hour slot on the Discovery Channel, lodged between the search for Big Foot and 'What did Edward II of England die of'. But just because the article is dreadful, doesn't mean that publishing convention demands an acknowledgement of Pall's work. In any case more subtle and telling challenges could probably be derived fom articles such as this http://oem.bmj.com/content/56/2/73.full.pdf

IVI
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
While I would dispute the motives Wessely attributes to people who claim to have mcs and electromagnetic sensitivities, these conditions do not exist. There are numerous studies that back this statement.

Why do I mention the above? Not to necessarily get into a debate about MCS and EMS but to show that since these conditions are not recognized by medical science, this puts less credibility on Martin Pall and is possibly why his letter was rejected.

It seems people, IMHO, are way too quick to find any criticism of Wessley. When we pick on everything Wessely does, it's like the boy who cried wolf. People will dismiss any of our points. We need to prioritize our criticism and maybe this topic is one of those priorities, I don't know. I am not a defender of Wessely s work but at what point do we start getting diminishing returns when we criticize him?

Can we access Wessely's full paper? I would feel more comfortable about expressing my opinions after getting as much information as possible. My opinions are flexible depending on what data is available.

If anyone is interested in some of the science the following is a good source of information. I will add more if/when I have the energy.

http://www.sciencebasedmedicine.org...-health-effects-of-electromagnetic-radiation/
Barb

Electromagnetic sensitivity has yet to be proved. MCS is based on more solid evidence, but like all MUSes requires more research. The sbm paper criticizes EMS and goes into detail, but lacks detail on MCS. The evidence for MCS is reasonable solid, making it a strong hypothesis - but its still controversial and requires more research. So do ME or CFS.

The probability that MCS does not have a genetic component or is not real appears to be very low.

However due to problems in diagnosis it is currently impossible to be sure that everyone with a diagnosis of MCS has the same problem. Who knows what range of problems exist in this population?

The sbm article is mostly careful not to promote psychobabble, but it comes close to implying it at points. Those who favour a psychobabble explanation might well think this article supports their views, while those who favour more rational interpretations might have no problem with this article, although I think to equate the current validity of a diagnosis of EMS with MCS is fallacious.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia

barbc56

Senior Member
Messages
3,657
I read his website and it's too non scientific for my tastes.

MCS can have various definitions from high exposure to pesticides to severe illnesses "caused" by perfumes and such. There is less evidence for the latter.

I will add more tomorrow.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I read his website and it's too wooish for my tastes.

The NO-ONOO hypothesis (model) remains unproven. However all the pieces are scientifically valid. What remains to be proved is whether they are relevant. Most scientific biochemical models use valid pathways and findings, but the complexity of interactions make the inferences dubious. They have to prove the model, and the NO-ONOO model is not proven, but it may yet be. Its a valid contender. That makes it science, not woo.

In the interest of disclosure I was an online debating partner for Marty for years, long before his website or commerical interests. I am also aware of successful clinical trial/s with lung hypersensitivity (though my therapy for it works better for me, is simpler, and less expensive, than anything used in that trial). Its an area that needs more research, but its got a lot of mainstream scientists interested.

His book gives much more detailed explanations, and has a good chapter on psychobabble.
 

barbc56

Senior Member
Messages
3,657
he NO-ONOO hypothesis (model) remains unproven. However all the pieces are scientifically valid. What remains to be proved is whether they are relevant.

This is often used as proof in alternative medicine. It contains a bit of scientific evidence but then fits the information to a preconceived hypothesis.

I just have a hard time with anyone who is also benefiting monetarily from treatments that are based on hypothesis that don't have sufficient backing of scientific evidence.

You may have missed my edited my comment above your post as it looks like our posts crossed.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
While I would dispute the motives Wessely attributes to people who claim to have mcs and electromagnetic sensitivities, these conditions do not exist.

That is a quite harsh implication there and thing to say when so many of us who have ME have MCS with it.

I'd like to point out that MCS may be more recognised then you currently think. I know one of my states biggest hospitals (An Australian state hosp) have built (not sure if its finished yet, it was in process of being built last year) special MCS friendly area as MCS sufferers previously many of these couldnt even got to hospital when they were sick due to the MCS issues.

For more info on MCS see the MCS section of the SA ME/CFS society website. http://sacfs.asn.au/mcs/index.htm

Wikipedia is a bad place to quote as far as many things.. be it ME/CFS or MCS as it is biasely done there (to the point where they even close down people putting things which fit the wiki criteria at times on these pages). If you dont believe me add something relevant to the ME/CFS page and you will see it almost instantly taken off. (A handful of people control the whole page and wont let relevant other things on it so its far more biased then it should be with missing info.. same would go for the MCS page).

The World Health Org (WHO) recognises MCS. So does the Amercians with Disabilities Act, US EPA, HUD etc (info from article ( http://sacfs.asn.au/news/2012/05/05_14_cuyahoga_county_ohio_mcs_proclamation.htm State of Washington MCS proclamation ).

Even the CDC is taking action as far as MCS goes see below..

In June 2009, the CDC implemented a new indoor environmental quality policy for all its facilities. This policy prohibits, among other things:
  • Incense, candles, or reed diffusers
  • Plug-in or spray air fresheners
The policy also states: "[The] CDC encourages employees to be as fragrance-free as possible when they arrive in the workplace. Fragrance is not appropriate for a professional work environment, and the use of some products with fragrance may be detrimental to the health of workers with chemical sensitivities, allergies, asthma, and chronic headaches/migraines.

C Building Occupants
It is important that personal be aware that the use of some personal care products may have detrimental effects on the health of chemically sensitive co-workers. Personal care products (colognes, perfumes, essential oils and scented hair and skin products) should not be brought into, used or otherwise applied at or near action workstations, in restrooms or anywhere in CDC facilities.

page 2 of that document.. there is probably more on it all in this document but its too much for me to read currently. Note they didnt use word "allergy" in last quote but refer to issue as being "chemically sensitive".. That is so it covers MCS. Anyway.. I just wanted to make it clear that MCS in recent years is being taken far more seriously and even gov policies are being changed due to it. It is not an illness which does not exist! (they wouldnt be changing policies or changing hospitals.. to make it safer for all, if it was just a mental health condition).

It is recognised now that there is many people who have MCS and do have health issues with perfumes et.


http://depts.washington.edu/exposure/CDC Indoor Environmental Quality Policy.pdf
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Some types of chemical sensitivity have been proved, and this started in the 1980s so far as I am aware. We know the chemical basis of them, what factors impact them, but lack definitive cures. This includes amine and salicylate sensitivity. What distinguishes chemical sensitivities from allergies is mechanistic. When a contact threshold is released in allergy there is mast cell and other involvement - an immune response. Chemical sensitivities relate to biochemical responses, at least with respect to amines and salicylates. The body can tolerate a certain amount, below which it is symptom free. Once its compensatory mechanisms are overloaded then it starts causing harm. This harm is entirely dose dependent. The bigger the dose, the bigger the harm. That is where avoidance diets come in, but in my case I dislike them because the body has reduced capacity to cope with accidental contact in such conditions.

Claiming that MCS does not exist is without evidence - its the other kind of woo. Claiming that some cases of MCS are probably something else might be valid.Claiming that the nature of the patient cohort in MCS or the mechanisms for MCS are not understood is valid. If anyone is saying that either its a proven and understood phenomena, or that its disproven or does not exist, that is grounds for joining the Woo Woo Club. When uncertainty exists, when the data is there but insufficient to be conclusive, its all an open question.

Most of the chemicals implicated in MCS are neuroactive. That is the basis of Marty's claim. There is a lot of evidence on this. What is not understood is how some neurological activation might lead to extreme and even lethal reactions. That is part of Marty's model, and unproven.

I am aware of other research (not Marty's), still unpubished so I can't go into detail, that shows that dietary factors that are very specific to MCS are important. I have been waiting for this research to be completed and published for years, and indeed have not checked lately so it might have been published without me knowing. This involves treatment too.

I don't think there is much doubt that some cases of MCS are misdiagnoses, this is also the case with many other diseases, including MS, ME and CFS.

I am reading parallels of this argument in psychobabble. Freud was convinced hysteria was due to psychological and not physical brain lesions. Thomas Szasz was convinced that hysteria was a made up illness, which I agree with, but further that it did not exist and that the patients were not sick. This last part is a statement of belief, its more woo than science. In the sense that the diagnoses is largely a fabrication in the literature I agree with Szasz, but I have no evidence that every single case of hysteria is due to something else (though a great many have been proven to be something else) or that none of these people were even sick, nor even that at least some cases of hysteria do not exist.

At the time the diagnostic capacity did not exist to diagnose them properly. Medical historians have gone back and rediagnosed many with epilepsy or other disorders, while at least one patient of Freud has been indentified and it has been shown that Freud's account of this patient is fraudulent. Hysteria is the modern version of witchcraft, bad humours, demonic possession, curses etc. Its a woo explanation.

Hysteria should have been considered a hypothetical disease not a real one in an ideal scientific world. It still baffles the medical community who have no objective markers or objective understanding of mechanisms. MCS at least has data on mechanisms, its just not complete. Is it a real disease? I don't know. What I do know is that people are sick and we don't fully understand the mechanisms. So I am not prepared to say MCS does not exist, not until we fully understand the mechanisms underlying why these people are sick. That means that MCS needs to be researched, which means we need to consider it a valid research category at least.

Bye, Alex

PS Let me be clear about hysteria as a woo explanation: the explanation is woo, the diagnostic category is hypothetical, not woo.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
This is often used as proof in alternative medicine. It contains a bit of scientific evidence but then fits the information to a preconceived hypothesis.

Marty did not benefit financially from this for many years into his research. He is well published, and often cited.

This "proof of alternative medicine" argument does not fly. Every modern scientific model with biochemical complexity fits this pattern. The evidence does indeed fit the hypothesis. Thats what an hypothesis is. The difference between pseudoscience and science is what comes next, although the history is often very telling as well.

The history of many alternative medical ideas goes back decades or centuries. They started as unscientific unproven ideas, which then attempt to obtain scientific data to validate them. What distinguishes pseudoscience from science is the next bit: science gets tested, not just validation.

Think of it this way. Every hypothesis is speculative. Good hypotheses fit the facts. You can get more data to validate the hypothesis, which makes the hypothesis stronger. Pseudoscience does this as well as science. In science however, the contrary data is part of the research agenda: its acknowledged and the scientists works to improve the hypothesis. In science the hypothesis is also tested in an attempt to create contrary data.

In pseudoscience there is no or minimal attempt to explain contrary data, and in very bad pseudoscience this data is ignored, dismissed or even argued against with emotional rhetoric. Hmmmm, where does psychobabble fit here?

In nonscience however, the underlying hypothesis is NOT testable. So there can be an accumulation of data to show verification, but no way to test it.

In the case of the BPS approach to CFS (which largely ignores ME) they argue for therapies based on the ideas in the hypothesis. Its only an indirect test, and therefore not scientific. Its nonscience with respect to the underlying model.

Bye, Alex
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
perfumes are a recognized trigger for asthma, just sayin'

such things can also trigger migraines

neither are in dispute as to being extant conditions.

both qualify as serious.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
We have not a clue what vile chemicals have been being pumped into the environment and into the food chain for the last century or so. You should start with the Industrial revolution, go on through the discovery of plastics and all the gunk their manufacture releases, (pseudoeostrogens)

and now, of course, the whole industry of chemical stinks and unneccessary cleaning fluids, all the women piddling out contraceptive hormones - now creating fishy mutants, and the whole water supply contaminated by them.

All this unnatural stuff manufacturing has been pumping out for decades, with not one jot of concern for any effects it might have or taking any responsibility for it, will have been building up and concentrating through the food chain.

It seems to me that MCS is very highly likely to be unavoidable, even if still unproven. I will not dismiss it.

As to EMS, the clusters of leukaemia around pylons is known. My partner is an EMF engineer, he tells me these things do create an excess of ions in the atmosphere around them.
It's not something I would dismiss either.
He won't keep his mobile phone in his pockets.
He won't turn it on either - that's when it is emitting the highest doses of broad frequencies.:alien:
 
Messages
95
EMS is one of those things which always draws out the sceptic bandwagon. But at best a sceptic can only supply you with 'no evidence of harm'.

If there are genuine cases, I'm sure a lot of possible research will be precluded by bandwagoning. EMS would be an inconvenient condition based on the currently popularity of wireless technologies. It's more convenient to the selfish desires of humanity if a minority of sufferers simply die out or hermits away from the rest of the population.

I find the level of prejudice towards such possibilities disheartening.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I agree with you completely..
All anybody ever needs for cleaning is a bit of sodium bicarbonate and a bit of vinegar along with an everyday bit of detergent for dishes and soap powder for clothes, with the addition of a bit of caustic soda for really tough jobs.
Yet we get tons of sodium lauryl sulphate and EDTA shoved into things - both of which are highly dubious health-wise.
Manufacturers persist in "R&D" to further alter smells and add more dubious chemicals - so the can advertise as "new" and "improved" - and it is accepted because business is doing it to further their profits.

What is really annoying is that folk buy into it. Consumers are guilty of promoting it, just as they are for allowing supermarkets to take over everything and shut down all the lovely smaller shops.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The world is like a huge beaker full of chemicals that children playing with a chemistry set are throwing in to see what will happen. They have no idea what will happen, and mostly nothing blows up, but if you ask them if its safe you will probably be told that. Make that millions of people, millions of beakers, and millions of chemicals, and the predictability of the result becomes problematic. What is certain however is that at some times and in some places toxic reactions will occur, thats just a numbers game.

Huge power pylons are different to small mobile phones though. I think there is some evidence that mobile phones are dangerous to the brain, but its far from conclusive as the most compelling evidence I am aware of it about location and frequency of brain tumours, which might have other causes. Let me give one off the top of my head: its not the radiation from the phone, its the outgassing. Mobile phones get hot, outgas nasty stuff including plastics solvents, which are then absorbed into the skin. How would you test this? Skin and lung tumours should be more common in these people too, and indeed such cancer should be common in a wider range of appliances. This is only speculation of course, but I wanted to do it to show that there are other potential explanations and that its science that will determine which is right ... eventually.

Hyge pylons carry a lot of electricity. There are laws about how close people can live to them for a bunch of reasons.

Microwave towers have also been linked to cancer clusters, but again thats not conclusive. Power companies do not fund independent research on this, governments have little interest in doing it either, which leaves concerned citizens - who typically do not fund science. Its an absence of evidence argument to claim they are not a problem, but also there is absence of sufficient evidence to prove a problem. To me that sounds like a good argument for more research.
 
Messages
15,786
. Power companies do not fund independent research on this, governments have little interest in doing it either, which leaves concerned citizens - who typically do not fund science. Its an absence of evidence argument to claim they are not a problem, but also there is absence of sufficient evidence to prove a problem. To me that sounds like a good argument for more research.

I think this is a big part of the problem: people are having symptoms for which there is no obvious explanation. So they look to their environment, and form one or more hypotheses about what might cause their symptoms. These people generally aren't scientists, so may not have a way to differentiate between the quality of these hypotheses, or know how to test them appropriately.

With MCS, there are strong indications that chemical exposure caused it, and there are objective signs of a reaction. With EMF there is no support of the theories, but in addition to a lack of support failing to disprove a theory, there is also the possibility that unconsidered theories cause the symptoms. In either case, I think it's important to consider that lack of proof for a cause does not mean that there is not a problem, or that the symptoms are not real.
 

Hip

Senior Member
Messages
17,820
The primary problem with Wessely School psychologists, and others of their ilk, is not so much their work on identifying psychological phenomena (in this case, the undisputed fact that some patients do indeed remove themselves from modern society, to live in isolation), but the trouble with their work lies in the theories they provide to explain these phenomena.

The work done by the Wessely School in identifying psychological phenomena (behaviors and mental symptoms) in various patient groups is generally fine; it is their explanatory theories of these phenomena that are highly dubious. These Wessely School explanatory theories always seem to rest of on psychogenic, psychosomatic or psychosocial models (which are often pretty unscientific), and never consider the biochemical, immunological or neurological mechanisms that may be driving these psychological behaviors and mental symptoms.

Now Wessely himself admits he knows next to nothing in these biochemical, immunological or neurological fields, and thus it is clearly his intellectual and academic shortcomings that prevent him from offering any explanatory theories that consider underlying biochemical, immunological and neurological dysfunctions.

And this is the crux of the problem with Wessely School psychologists: their intellectual and academic limitations prevent them from engaging with biochemistry, immunology and neurology.


My advice to the Wessely School would be to continue working on identifying and describing psychological phenomena, but refrain from providing explanatory theories of these phenomena. Let the biochemists, immunologists and neurologists provide the explanatory theories.

After all, this division of labor occurs in other complex academic fields. For example, in physics, there is a division of labor between the experimental physicists, who identify and catalog natural phenomena in laboratories, and the theoretical physicists, who work on theories that explain these phenomena. Marie Curie is one example of a great experimental physicist; Einstein an example of a great theoretical physicist. Very often, physicists that are good at experimental work are not very good at theory, and vice versa. So it is nothing to be ashamed of if your knowledge and skills are limited, provided you divide the academic labor in this proper way.

The Wessely School should not overstretch themselves, and try to provide both a description of psychological phenomena in various patient groups, AND an explanatory theory of these phenomena.

I don't think anyone here could argue with any of the psychological phenomena that have been identified and described by Wessely School psychologists in various patient groups; after all, these are observable facts. And up to this point, the work the Wessely School do is fine. They should stop there, and not go on to provide unscientific psychogenic, psychosomatic or psychosocial models to explain these observable facts. They should simply hand over their work to biochemists, immunologists and neurologists at this point.