Martine McCutcheon opens up about the seven years she suffered from cfs and depression

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I have merely responded to the Martine supporters/defenders on this forum, Esther. As the celebrity defenders seem to want to have the last word.

The title of this thread is:
'Martine McCutcheon opens up about the seven years she suffered from cfs and depression'


Nothing "weird" about posting on that topic.




I think we have every right to "expect" that celebrities inform themselves about ME before doing a self promoting media blitz.


But, of course, British celebrities must be allowed to misinform the british public about ME, mustn't they?

We've had David Puttnam promoting CBT as 'cure'. We've had Barbara Windsor saying she had ME and referring to it as "That silly little illness"... a couple of months later , there was Barbara promoting her workout fitness DVD.

Shirley Conran helping Peter White to publicise the CBT/GET Clinics, putting her name to the biopsychosocial ME NHS 'treatment/management'.

And Esther Rantzen and her daughter with their repeated "Emily's cured" stories in the Mail.
Lightning Process trainers still exploit Esther and Emily's Mail story that she was "saved from a living death" and cured of ME by Lightning. Except she wasn't.


And of course, these fully Media Savvy celebs - its never, ever, their fault , is it, when the papers write a misinformation story about ME, featuring the celeb.


Were were they all when Sophia Mirza was illegally sectioned?

.Are they publicising the dreadful situation of Karina?

The answer is Nowhere and No.


And then ME patients are expected to nicely and politely squander their precious energy informing and educating the celebs, who apparently have never heard of or applied the term 'Google Search', in order to to inform themselves. They probably have no time left over from attending glossy celebrity media events.

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Well said Wildcat.
I'm disgusted by this "celeb"
She has done damage and probably does not even know it.
Why is everyone bandying around this minor talent of shallowness?
It would take Mrs Martine 2 minutes to google Karina Hansen, Sopia Mirza and find out the damage it makes to associate depression and ME in the same sentance...nevermind lightning process...
I don't think she was ill with ME at all. Perhaps she was misdiagnosed.

Those gigantic stilleto heels she wore in her promotional photo could never be worn by a severe/moderate ME patient or someone with extremely severe FMS.
I could say more but I feel too angry, and I don't care who I offend. She has done harm here to all the severe patients.
It would be better for us to have no "publicity" at all, or for her to hide her illness or call it pure depression than to further damage the rest of us with conflating ME and antidepressants and work out videos.


It can't all 100% be the newspapers and media's fault. I find her facebook page disgusting too and that must be under some control of hers.

 

I don't think she promoted it - just mentioned that it had been recommended. Many people with ME are not aware of what is and what isn't quackery. ME can involve a very long and confusing learning curve. I didn't know about effective dietary interventions until last year. I didn't know as much as I needed to about exertion and PEM until a few years ago. Yet I have been ill since 1995.

 

If any of my facebook friends recommends her Facebook page, I'll unfreind them.

Not before publishing the CCC for me/cfs tho. X

 

I don't think we can reasonably expect the general public to understand ME. There is so much BS out there, much of it appearing to come from 'experts' - can people be blamed for believing the wrong thing?

It's been a long journey for most of us from ignorance to something resembling understanding, through learning from mistakes, sorting the good science from the quackery, trial and error, and learning from each other. Many of us spent years in bewilderment, believing a lot of BS and suffering as a result.

It must seem like another world to non-sufferers.

Why not prepare a brief summary of facts and misapprehensions for anyone who does recommend McCutcheon's page, or any others you think are inappropriate? You could see it as an opportunity to educate people who have at least shown a little interest and desire to help. The CCC may be good if it's not too long or technical.

 

Well said. Thanks. X

 

There's been some very understandable heated feelings expressed in this thread. I totally understand the frustration etc., but I think the anger is misdirected. Martine is just a simple individual (not a scientist, not a researcher, not an advocate, not a government employee, not a health service worker), who has been very ill, and doesn't understand her illness. Now she's given a personal interview to the media probably in order to have some sort of an income. She's not a professional ME advocate, she's a patient, and we can't expect her to be perfect.

Also, as far as I've seen, she hasn't conflated ME with depression at all. It is the media that has done that. It's not her fault that she experienced comorbid depression, but she has been clear to state that they are separate illnesses. Perhaps she's never had ME, but that's the diagnosis she has been given. She can't just ignore her experiences, and pretend that she didn't experience exhaustion and depression etc.

I think our anger, etc., should be directed towards the people who are really responsible for messing up our lives. And not a simple celebrity, who doesn't understand the science or her illness. Martine is not to blame for our predicament. It's the government, the health authorities, the psych-lobby and the media, etc. Let's focus our anger on them.

BTW, I'm not a supporter or fan of Martine. I don't have any feelings towards her at all (apart from some sympathy because she's been so ill.) I'd hardly even heard of her before now. I've just been correcting what I believe to be errors in this thread, that's all.

 

Actually some of the people, including some of my doctors, who have messed up my life are friends and family
who never took the time to try to understand my me/cfs. Despite my medical
records showing that I had ataxia (balance), orthostatic intolerance (abnormal bp and hr), etc etc. I was told
consistently that I could do whatever I wanted if I tried hard enough. My pem was always viewed as
depression but I wasn't educated enough to explain that it was pem.

I can't relate to being this ignorant so I never understood this. Seriously,
how can they expect someone who can't stand up for any length of time to be "normal"
at will ? This defies all logic. Tc .. X

Ps. I'm not angry with Martine. I love hearing recovery stories. I'm just upset about the possible onslaught of ignorance and further judgmental comments her
experience will lead to.

 

Mega-like!

I have no interest in 'celebrity' either, but if showbiz is your job, the papers want to write about you, and people want to read about you, and if you are trying to start working again after being very ill and going bankrupt, the media is an obvious place to publicise the fact. It would be unusual for someone in showbiz not to do so.

No one has been making a special case because Martine is famous, or claiming that she can do no wrong. She is just human, prone to error as we all are, and as susceptible to being hurt by personal attacks as anyone else. For example, I believe that Stephen Fry contemplated suicide after some particularly venomous media coverage.

 

I too was very hurt by family reactions, which were similar to those of your family. Ditto doctors. The latter were presumably following NICE guidelines (see recent thread for some extracts from these - they are seriously bad).

It's been the same for many of us, and often still is.

It hurts like hell, and a large proportion of us are very angry, but don't want to waste what little energy we have on hatred and fury. Anger can instead be channelled into constructive action.

I would not be allowed to type some of the words I say/shout out loud in reaction to some 'expert' BS and media rubbish!

 

Yes, many of us have had similar problems. In my opinion, this all stems from ME being aggressively and successfully promoted as a behavioural disorder by the psych-lobby over many years. But that doesn't excuse doctors and therapists for their ignorance.

Today, I saw someone on AfME's facebook page saying that pacing and GET are harmful. I was puzzled because I'd never seen pacing described as harmful by a patient before now. It turns out that the patient had been to a GET clinic which had somehow managed to conflate pacing with GET, mix them together, and then claim that they were administering them both at the same time. (Which is impossible in my opinion.) The patient had a bad reaction to the pacing/GET, and so now thinks that pacing is harmful. This really upsets me. Pacing is the only thing that has ever helped me, and now it seems that the ignorant GET clinics are annexing it for their own purposes, and distorting it so it's useless, and it's not pacing at all. (The patient had a really bad experience with the clinic.)

Yep, we're all the same. Media stories are rarely helpful, and often evoke strong emotions in us. I often post comments after articles, or write to editors/authors, to do my little bit to try to put the facts straight. (I managed to get the Guardian to remove a link to the Lightning Process recently, in an otherwise quite good article.) But I don't personally believe that Martine is being in the slightest vindictive, or nasty, unlike many of the media articles that we see. That's why I'm not angry about her.

 

I'm a big tent man and I have bitter experience at the depression-CFS/ME interface.

Confusion of terms and the failure to respect the fact that mental illness can co-occur as PART AND PARCEL of neuroinflammatory conditions - ME or otherwise - leads to those with mental symptoms having their physical condition ignored totally, as happened to me. I was told I had personality difficulties and was unable to adjust to adult life. This conclusion would have been far less likely if the medics had appreciated the physical side and such appreciation would have been more likely if the mental aspects of neuroimmune fatigue were accepted. Hostility to those with mental symptoms AND ME/CFS among some ME diagnosees is galling. It also plays into the hands of those who accuse the ME community of being naive about and hostile to concepts of mental illness. Many of us are infact better informed about the overlap between neurology, immunology and psychology than some supposed experts but this gets lost in heated debate (and pseudo-debate).

We have to be very careful re. judging those with depression and an ME consistent condition, esp. on the basis of media reports. We are still in the land where CFS and ME are political as much as medical terms and until we are treated seriously medically, the terms ME/CFS etc will be bandied about with a curious mix of vagueness and dogmatism in the media, among medics and amongst ourselves, with the potential for needless misdiagnosis of depression and other conditions as ME/CFS or vice versa, and alongside this the disparagement of those genuine ME/CFS sufferers who also have a pronounced mental aspect to their illness.

Bitter personal experience prompts me to reiterate what I have said before re. depressive symptomology in organic neuroimmune states, beyond primary depression. If the unfounded dogma is put about even by vague implication that depression is an exclusion diagnosis for CFS/ME, that those with both are dubious cases etc etc, then those who do have both may be treated for depression, but their physical symptoms will be put down to that depression, when the situation is the reverse, leading o the inadequate treatment of both. Please let's not fall into the trap of cheering while those with organic ME consistent fatigue AND depression get poor treatment from docs who insist it is soley depression.

The more we infact see ME and allied unexplained fatigue states as a regular organic illness the less we will need to dismiss any psychiatric inputs/aspects. Though it does not exclude psychological cause, neuropsychiatric does not mean psychological. If anyone doubts the neuropsychiatric aspect of various neuroimmune conditions they can look up Lyme's, post sarcoidosis, lupus etc. etc. Who is to say that Martine's depression was unconnected with the biology of her condition?

Further psychological stress cannot be dismissed as a co-factor in development of physical illness (not somatoform, but organic responding to organic treatment). Parkinson's is worse under stress, psoriasis can be worsened, etc etc.
Anecdotally I know of at least three people with different non-ME/CFS recognised neuroimmune conditions (two ex medical professionals) who all say that overwork and/or emotional issues pushed them towards, if not into, organic illness. Shall we dismiss them as psychologisers? All of them were eventually diagnosed as organically ill and treated appropriately. The more "normal" our conception of ME/CFS, the more ready we will be to concede that psychological aspects can play a role as in these and other recognised organic conditions.

Of course the psychologisers blame "physicalists" for the politicisation and vagueness of the terms around ME and for fear of psychology/psychiatry. I believe we are not so much afraid of psychology as of naive and dogmatic psychologisers of whatever school of "thought" and until NICE gets its act together this situation may continue - but this should not lead us to be suspicious of anyone who refers to mental illness int he context of suspected ME/allied conditions. The key of course is for more medical professionals themselves to see ME/ME consistent conditions as regular illnesses - to acquaint themselves with the biology, to learn, to investigate, to diagnose thoroughly, rather than equating the challenging and unusual with somatisation. Better informed hacks would help too. As it stands some of the best informed are the patients.

As to Martine, what do we really know? Psychological and behavioural inputs may also have been a major precondition of an organic illness in her case. Recognition of lifelong or acute psycho-behavioural inputs does not negate the organic nature of her illness or mean she was "just" mentally ill with primary depression - unless we of all people are willing to follow the worst ideas of the psychologisers whom we generally hold in contempt:-

"You say you're physically ill. Well you were depressed as a teenager, so that's your diagnosis. Have some pills/go to a therapist. Take more exercise Go away"

Is that what we want to support?

Her depression may have been primary or purely reactive to ME/CFS. The latter is sth many of us are familar with. If it is insisted that she "only" had depression, then we would have to agree with the psychologisers that depression can present as ME, unless she was deliberately feigning her physical symptoms. One line of thought plays into the hands of the psychologisers, the other into those of the absolute dismissers.The line of though that depression and other organic symptoms may play a part in one organic whole, is imo a much more reasonable and pragmatic approach, allowing room for the like sof Martine - and myself.

Many immune related conditions can cause depression, as I've said above. Development of depression may be dependent on genetic and epigenetic factors and if you add in for ME/CFS etc. dysautonomia, gut brain axis, sleep disturbance, low mito function, reactive grief, despair and anxiety + the need to cope when it is the very organ of coping - the brain - which is affected and it is hardly surprising if SOME of us have had depression, while being genuinely organically ill beyond anything that can be labelled purely "mental". and consistent with ME diagnoses.

It is utterly illegitimate to exclude a diagnosis of ME on the basis of the co-occurence of depressive symptoms and even worse to disparage such sufferers.

I am sorry to say the following but if those with mental symptoms do not have "real" ME, who has "real"" ME anyway? No one ever gets tested for specific ME. Well hardly anyone. If you have transverse myelitis, you can get a test. Why not ME? Probably again to some degree, we're back to the question of psychologisers and politics - on the one hand you've got the false illness belief fanatics who don't want us tested for anything beyond their latest palette, and on the other hand it might turn out that many of us with real neuroimmune fatigue states/immunological dysautonomias i.e real organic illness, do not actually have specific ME , however sick we may be, which might be hard to take for those who have been told they have "real" ME, - partly as a pragmatic move to defend them from the pychologisers/doubting family/bullying school"friends" etc. Pragmatically ME might be the best diagnosis we can get, but how valid is it in any of us? I have a whole variety of ME/CFS diagnosis consistent markers, but still do not know if I have any myelitis.

CFS sceptical doctors love this muddle, some good doctors are trying to sort it out , Those who refuse to do proper biology point fingers at muddled thinking while maintaining the muddle by their own in/activity/dogmatism. I suppose it's no wonder many of us stick to ME, but ti causes alot of problems imo.

 

Too long for me today Richie! Got to 'like' for the effort though: it is a complicated topic, and there's a lot of room for misunderstanding when people try to be brief... best of luck to all.

 

I can't take your message in in its entirety but think I agree with a lot of your points. My own take is:

I don't think many people with ME are hostile to people with co-morbid depression. Indeed, there are open, supportive discussions between PR members about depression and ways to treat it.

I believe that there is likely to be involvement of mental stress in the development of ME, via effects on the stress hormone system, at least for many sufferers, myself included.

I do not believe that it follows that ME itself can be treated through psychiatric methods. I use analogies such as: if you have a car accident due to a lack of attention, tiredness, excessive alcohol consumption or the appearance of a wasp in the car, you cannot fix the damage the accident causes to yourself or your car by removing those causes. You have to fix the physical damage, as the causes are not necessarily there any more.

I don't think that depression should be on a list of exclusionary or inclusionary issues for diagnosing ME. It can be a comorbidity in a very wide range of conditions, as I think you also state.

In ME research, there will sometimes be good reason to exclude people with comorbid depression to avoid confounding variables.

 

Sorry to be verbose Esther. Thanks anyway for the comment.

MESci
I think lack of definitive diagnosis of ME as opposed to other organic fatigue conditions and indeed any forms of depression which may be marked by fatigue leaves us with confounded cohorts at present. Thus it is difficult to maintain that ME diagnosees , as opposed to real ME cases cannot be treated by psychiatric methods. we just don't know well enough imo who has ME. There are also doctors such as Goldstein who based his practice around neuromodulatory drugs incl. antidepressants, without any denial of organic basis (albeit as an American he used the term CFS rather than ME). Goldstein actually dumped therapy in his practice in favour of his pharmacological approach, and replaced the term somatoform with neurosomatic.

I agree entirely with what you say below :-

"I use analogies such as: if you have a car accident due to a lack of attention, tiredness, excessive alcohol consumption or the appearance of a wasp in the car, you cannot fix the damage the accident causes to yourself or your car by removing those causes. You have to fix the physical damage, as the causes are not necessarily there any more".

I rememeber Teitelbaum saying at a fibro conference sth tot he effect that a stressed out exec does not go to therapy straight after a heart attack.

I also very much agree that there will sometimes be good reason to exclude people with comorbid depression to avoid confounding variables. Subgrouping is a big issue beyond the depression-CFS/ME interface.

I accept that many with CFS/ME are very supportive of those with depressive comorbidities but I do have concerns about tone sometimes. Also, while I recognise the utility of shorthand differentials such as "better after exercise = depression, worse = CFS ( ME??)", or "low cortisol =CFS (ME??), "high cortisol = depression" the situation for some with real organic neuroimmune fatigue beyond/other than depression, is somewhat less clearcut.

Thanks for your response.

 

A quick point -- exclusionary doesn't mean that anyone with the exclusionary condition is excluded from an ME/CFS diagnosis. It means that the condition should be identified and treated to exclude it as the cause of the symptoms. If the symptoms continue despite successful treatment of the exclusionary condition, then the patient has ME/CFS with comorbid whatever.

So, someone could have only primary depression with fatigue-type symptoms. If the depression is treated and the depression and fatigue are relieved, then no ME/CFS. If the person has depression and ME/CFS symptoms, is treated for depression relieving depressive symptoms but s/he still has ME/CFS symptoms, then s/he has ME/CFS with comorbid depression. The point is to exclude depression as the cause of all the symptoms before giving an ME/CFS diagnosis.

The problem arises when people (we know who they are) conflate major depressive disorder (MDD) with ME/CFS when the symptoms are really quite different. It's quite possible to have both, but it is equally possible to have only one or the other. If there wasn't so much misinformation out there about fatigue being the primary symptom of ME/CFS, this problem would be much smaller.

 

Thanks for the clarification SOC. I would agree that MDD and CFS+/ME show many differences in many patients. Whether actual encephalomyelitis or encephalopathy would be touched at all by antidepressants, I don't know.

But imo the conflation of CFS and ME also presents a problem here. Whereas ME is one of two specific conditions, depending on who is using the term, CFS is "just" a collection of symptoms. If you have the symptoms, in my opinion, you have CFS, even if you have (also) depression and get better from antidepressants. You still had CFS if you had the symptoms. Only your CFS may have been quite different in cause from others. We all want to determine our own aetiology, and if e.g. X% turn out to be Lymes, X% coxsackie, X% depression should we allow some to say "I had CFS due to Lymes/Coxsackie" but not "I had CFS due to depression"? That seems inconsistent. Though the best way would be to name each condition properly.

You are right that the crass identification of MDD with CFS/ME is a major problem, but imo the popular identification of much organic CFS as ME is a complementary problem. I doubt very much that actual myalgic encephalomyelitis can be caused by depression, though as with other iinflammatory disorders, psychological issues might have a negative influence, but I remain agnostic on whether CFS can be caused in some cases by depression or other psychobehavioural issues, because of several anecdotal reports form people who have improved after non phrama interventions or after antidepressants, peopel who I believe were previously symptomatic consistent with CFS, - though none may have had actual ME.

I would also say as you do that it is possible to have MDD and CFS and or ME. These may be unrelated comorbidities. But if both have the same cause as in e.g. neuro Lymes, it may not be so practical or easy to differentiate symptoms. It might be objected that Lyme's is not CFS but that can be said of any CFS where a specific aetiolgy is determined (which is what we all want). Myelitis can certainly occur in Lyme's . And fatigue would only be one symptom of neuro Lyme's, as you rightly say it is in ME/CFS.

Incidentally, as far as I know, whereas Lymes patients show differences from non Lyme's CFS on brain SPECTs, I do not think anyone has compared myelitis in Lyme with non Lyme myelitis among CFS/ME patients.

 

Re non-pharma interventions, some of us who are as sure as we can be that we have ME have improved significantly with non-pharma interventions, for example the leaky gut diet and supplements as discussed in this forum. I don't think there is any good reason to suppose that physical illness can only be cured by pharmaceuticals, surgery, etc. (i.e. modern or 'conventional' medicine).

One big difference many of us have noted between depression and ME is that with the former you lack motivation but have the physical ability to do things, whereas in ME it is the reverse. Obviously if you have both it becomes harder to diagnose, but PEM is a good way, and/or exercise testing, which shows biochemical abnormalities in ME but not, I think, in depression. Dr Snell has been working on this type of testing.

Professor Stephen Holgate is working on teasing out subgroups.

You can find info on all these topics on Phoenix Rising.

 

Thanks, MeSci,
I agree that much physiological medicine is non pharma incl .eg. physiological levels of hormone replacement.. Even prozac though a pharma product relies on boosting natural neurochemicals.

The approach you outline is the one I use too.

The "non pharma" people I had in mind are the ones who are symptomatic but claim recovery after purely psychological or behavioural interventions. As far as I am concerned they are either liars re. recovery. liars about past symptoms or represent a cohort in which psycho/behavioural or neuropsychiatric issues have been paramount, or are very subject to placebo. I just don't know what to think. If they are subject to pacebo whereas some studies suggest that pwME are not very subject to placebo, what might the implications of that be re. such a cohort? in the absnce of thorough investigation of patients it's a nightmare,.

I agree with the basic line that "pure" depression is marked by lack of motivation in the absence of physical disability, whereas an organic fatigue state not accompanoed by depression would show the reverse. But I think it possible that MDD is can be accompanied by organicallly mediated fatigue as part and parcel of the biology, such that both lack of motivation AND physical tiredness would be felt. Mitochondrial studies have shown mito problems in depression, although I read on Prohealth that the specific dysfunctions are different. fibromyalgia has also been found to ahve its own mito profile (allowing that whenever we talk about any findings we are talking about specific cohorts)..some depression is the result of inffection.

I would be interested to know more about differences in exercise testing between, say MS and ME and differences among CFS diagnosees. Such tests have been rightly used to demonstrate that diagnosees are organically ill, but are they specific to ME? Are they found in all CFS diagnosees incl. those with other suggested markers such as cytokine abnormalities, neuroendocrone abnormalities etc.?