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Guardian article "I had CFS. the Lightning Process at least offers hope."

Kenshin

Senior Member
Messages
161
Even real "hope" is a pretty empty concept, (perfect propaganda word because it doesn't actually mean anything concrete).
Reality doesn't care about hope. It doesn't care how much you hope you can fly, hope will never beat gravity.

I've heard it said on this board before - The lightning process is the lightening process of your wallet.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I wouldn't suggest clicking through. If it gets a lot of hits that's good for G and they will continue to print what they know will promote controversy and click bait.

In fact, I'd suggest a campaign to boycott the G if it were at all useful.

The heart of the conversation was this idea (and we've seen it here many times) of newly ill people needing something to give them hope.

What's needed is to offer them a better alternative. And then spread that news far and wide.

Edit to correct grammar
 
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Countrygirl

Senior Member
Messages
5,429
Location
UK
The author writes well about challenging health conditions,
.
....................perhaps there was the usual 'phone call' to the editor from a chum who needed a bit of good publicity :rolleyes:

...................editor contacts Vonny......................an obvious choice given her track record (see here............

https://www.theguardian.com/comment...m-psychosis-mothers-postnatal-depression-baby


................not that we want to give the Guardian any traffic..................


I had postpartum psychosis. More must be done to help mothers like me
Vonny Leclerc

“I don’t believe there’s anything wrong with you.”

The psychiatrist’s words pierced like a bullet. Months of suppressed grief became fat, heaving sobs and one defeated plea, “why are you doing this to me?”, before I ran out and collapsed at my husband’s feet. We’d been cut loose, left alone to career through my delirium. What could we do now?

At the height of my illness, I remember the smell of the bubble bath, how its sweetness crawled up my nostrils as I sat in the 10 inches of water I’d been permitted: jasmine, ylang ylang, shea butter. My mother had been summoned, and I’d been placed there for safekeeping while the phone calls were made, in the hastily mummy-proofed room, where any sharp object had been quickly bagged and removed. The baby’s cries came up through the floorboards, as did the quieter, heavy sobs of a grown man, my husband. I was a prisoner, with a thunder in my chest and a voice in my head – once a solitary whisper, which had multiplied and was now cacophonous. Arguing. Sibilant. Indecipherable. Perfectly still, I lay flecked with goosebumps.

In days, I’d gone from being a happy mother, high on my new arrival, to a husk, torpid and terrified of my own breath passing my lips. I was suffering from postpartum psychosis: postnatal depression’s bigger, uglier brother, which occurs in about one in every 1,000 women. It’s a severe mental illness that robs you of reason and your grasp on reality, all too often with tragic consequences.

Two years previously, I’d endured it after the birth of twins, for close to 18 months: the obsessive thoughts, compulsions and detachment, the vigilant night watch that robbed me of sleep, and the unshakeable belief that my babies were about to die, that my blood was clotting in my veins and would kill me any minute. My memories of their early years are stained with fear and dread. I’d approached my GP about my mental health during my subsequent pregnancy, but they went little further than a quick screening and assurances that I’d be fine because I was “well now”.

A few hours before that bath, I’d climbed out of bed to feed my new son. A baby, allergic to milk, including my own, and battling reflux, who seemed to exist only to cry and vomit incessantly. Sleep hadn’t found me since the previous feed. Tiredness sat heavy in my bones, and my mind had glitched, with one obsessive phrase on a loop: “Give him back.” He weighed nothing, but lifting the 6lbs of struggling confusion took every ounce of effort I could muster.

This bit is interesting:

There were interviews and helping hands, then, a mix-up. The staff were concerned I was feigning illness for sympathy, and making my baby ill for attention. We were abruptly discharged, and bounced to the clinical psychiatrist at another hospital. The assessment was that, despite previous serious postnatal depression, I was a malingerer taking everyone in. I was accused of manipulating hormone results through expressing the milk my baby couldn’t have, in order to gain treatment. Eighteen months of paediatric gastroenterology and endocrinological sleuthing would finally lay this accusation to rest. In the meantime, we tried to rebuild our lives, but couldn’t. Without support, we had no idea how to put the pieces of a normal life back together. I watched the people close to me melt away.

She eventually recovered, but she has experienced postpartum psychosis twice.

She seems a good choice of ally for our BPS friend :cool:
 
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Demepivo

Dolores Abernathy
Messages
411
......https://www.theguardian.com/comment...-postnatal-depression-baby................not that we want to give the Guardian any traffic..................


I had postpartum psychosis. More must be done to help mothers like me
Vonny Leclerc



This bit is interesting:



She eventually recovered, but she has experienced postpartum psychosis twice.

She seems a good choice of ally for our BPS friend :cool:


Good spot, explains a lot.
Can you edit the URL? (the last part) Thanks :)
 
Messages
84
Almost looks like Theguardian is actively baiting all the dangerous militant ME/CFS activists out there with all these quackery articles. Better watch out, there will be riots soon, and someone might have a soiled sock thrown at them if things keep on escalating!!
 
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user9876

Senior Member
Messages
4,556
It seems that the Guardian can't handle criticism or debate as they deleted my comment within minutes.

All I did was use words like "scam", "preying on vulnerable people" and "uncritical bilge". ;)

They do a a lot of censorship of comments from people with ME and given the criticism they generally allow on articles I think it shows the guardian has a very bad attitude towards ME.
 

Yogi

Senior Member
Messages
1,132
I am so cross with the Guardian I am not only not buying the paper I am not even clicking links to their online content at the moment. Which is the treatment I have only reserved for the Scum up to now.

Sorted out the problem as per this post

http://forums.phoenixrising.me/inde...of-the-smile-trial….54503/page-18#post-909719

@Chrisb - can you post this in your original post pls for the benefit of readers of PR.



She thought I was dead. You come home, call out, no answer. You walk in to find your 16-year-old crumpled on the dining-room floor. Drugs? Alcohol? It’s a leap the brain makes. Being so tired that they collapsed on the spot doesn’t feature. Months later, after all but abandoning school, I was told it was myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS). It was a diagnosis that felt like little more than a question mark. I’ve long since recovered, but I’m still frustrated by the lack of options for sufferers. How long will they have to wander this wasteland of unanswerables?

But there is perhaps a glimmer on the horizon. A small trial has shown that a commercial therapy called the Lightning Process helped speed up recovery for some youngsters. Though experts have dismissed it as junk science based on the shonky, largely debunked theory of neuro-linguistic programming, there’s a website full of testimonies, and celebrity endorsements. The whole thing has a cult-cum-televangelist piquancy that would crinkle the nose of most sceptics.

But the internet is febrile with discussion – especially now there’s been a positive result. CFS is poorly understood, so near-impossible to treat effectively. This therapy – however tenuous a hope – looks like a lifeline; if I’d been given the chance to try it, I would have. In fact, I’d have had to, because doctors offered me no help other than the name of the ME Association scribbled on a Post-it.

So much of CFS management comes down to personal experimentation informed by anecdote. Being a teenager is a multiplier for despair – it’s no wonder young people are clamouring to try the Lightning Process. Not knowing what was going on or how to make it better was torture, so I tried anything – acupuncture, homeopathy, acrid aloe vera shots. I needed some hope that my situation might improve.

I was born in 1987, the year “yuppie flu” made it into the dictionary; 16 years on, when I developed it, the label still clung. CFS arrives bound in its own mythology, and I didn’t have the energy or enough good information to protest about its dismissal. If the professionals couldn’t explain it, how could I? I’d become the class basket case. At 15, I was a straight-A student heading for law school. Then a mild virus became an ellipsis, a long drawn-out syllable of thing. At 16, fatigue set down roots, and my immediate future clouded over. My life slipped into slo-mo, while those of my peers’ gathered pace. Boys. Girls. Drinking. Sex. Adventures. They dipped digits in adulthood, while most days my toes never made it past the duvet.

I missed my higher maths class – that is a measure of how far I’d slipped out of reality. I was living an adjacent life of the teenage recluse. Deciphering class notes in bed, trying to cheat tiredness with Red Bull, lying on the floor drawing blue pastel hands so I wouldn’t fail art. One friend would visit, climb into my bunk, and just lie with me. CFS changed everything.

Then there was the aching, the dizziness, and the thick, milky cataract that grew over my mind. I remember lying in bed thinking about Slaughterhouse-Five, about the sybaritic pleasure of reading, picking out phrases I could recall: “Everything was beautiful and nothing hurt.” I ached to luxuriate in words, my now inaccessible refuge. Reading was like catching water in your hands; the words pooled for a moment, then slipped and were gone. I could do without boys if I could have books. It seemed unreasonably cruel to be denied both.

On one of the rare days that I’d managed to make it into school, a teacher pulled me aside, recognising that I was lost. He had wandered the same desert, thirsty for a cure. I leaned on the bench because standing was impossible, and he confided in me. It was an adult conversation, nothing about school work, just the honest dispatches from one sufferer to another. He’d tried a raw food vegan diet and pulled himself back to health. This was a man of science trading in folk remedies and Chinese whispers because to linger in the nothingness would have consumed him. We have to engineer our own coping mechanisms, because they are all we have while we wait for medicine to catch up. I went home and gave up meat.

If the Lightning Process, working alongside medicine, has shown results, it’s worth investigating. Young people with CFS need something to keep the flame of hope alive. They can’t sit around waiting for medicine to figure it out, while they, on the brink of everything, desperate to join the rank and file of carefree teens, can do nothing. It’s indescribably distressing to watch friends blossom into adulthood while you’re shoved into stasis by a mystery illness. They party while you sleep. They learn to drive while you sleep. They fall in love while you sleep.

ME is so much more than the symptoms – the truly devastating thing about it is how it makes you feel about yourself, as anxiety, depression and illness blight your “best years”. If this therapy can help stop the slow creep of hopelessness, or the submission to a condition, then it’s worth trying. Can you think yourself well? Maybe not. But the placebo effect is a powerful thing and believing there was a chance of getting well, even for a while, would have kept me afloat when I felt I was drowning.

• Vonny Leclerc is an arts journalist and social activist