#pacetrial

Just some of the reasons ME sufferers suffer so much… As Jenn Brea, the creator of Unrest, has stated, if she lived in the U.K., without access to the drugs that allow her to function on some level most days (whilst still being ill) she would still be bedridden with ME years later.

 Last week, Unrest, a brilliant, powerful portrayal of ME, was shown to MPs and members of the Department of Work and Pensions and other organisations involved with ME. The Unrest film’s team were joined by long-time advocates of ME patients, including the Countess of Mar, the ME Association and other heavyweight campaigners and specialists who have fought for justice for patients for many years in the U.K.

http://www.meassociation.org.uk/2017/10/me-association-review-of-unrest-in-parliament-i-cannot-recall-a-parliamentary-meeting-where-we-have-had-so-much-genuine-interest-in-mecfs-26-october-2017/

 It’s significant for ME to be depicted because for those wishing to support sufferers, it may bring more understanding. The reality of ME, a disease more prevalent than MS, which can be ‘more debilitating than most medical problems in the world, including cancer, late stage AIDS (until two weeks before death)’ is that it has been ignored and its sufferers have been left untreated.

 And I’ve been lying here thinking about what happens next.

 There is momentum with Unrest and many other voices and campaigns to see change and justice for the ‘millions missing’.

In particular, in the U.K. there is a call for a public enquiry regarding the decades of abuse and neglect of ME sufferers being requested by Dr Myhill via MAIMES.

And as I’ve sat thinking about that momentum and what needs to happen, I’ve thought of the great minefield it is trying to understand why this is such a big deal and I’m frustrated at how bewildering it still seems to so many.

How can the public even begin to grasp this mistreatment if they’ve only ever been exposed to the trivilsation and dismissing reports of mainstream media?

Why have people been left to suffer?

Why are seriously sick people sometimes so disbelieved and abandoned even by loved ones?

How can it  be possible that there is no real treatment, when key research 30 years ago explained at least part of the pathology of ME and yet has been ignored?

 So, I decided to create a summary of some of what I know, some of the information I’ve gathered,some of my lists of words over the last few months (in this particular severe relapse) in an attempt to paint the bigger picture. There is much politics and complexities of years of ignorance surrounding ME. And this just touches the surface of it all. It’s by no means the definitive guide. There are so many articles and blogs already excellently representing this information by more knowledgeable people than me and I’m grateful for what I’ve learnt from many others. Especially other sufferers. But I just wanted to be able to just see  all these facts together with my own thoughts and ponderings. For my own brain and hopefully for others too, who are wanting to understand.

 It is ABSOLUTELY CRUCIAL to understand the background story of ME to fight for yourself as a sufferer or to advocate as a supporter.

I think this is a comprehensive summary that may take 20 minutes to read but will allow readers to grasp the complex situation of the world of ME.

People often ask how to help. I’m too ill to accept cups of tea and offers to clean and other lovely things but reading this will be the best support ever.

1.     THE REALITY OF ME VERSUS THE STIGMA

“All diseases are cruel but some have a refined brutality all their own. One such is ME..It is a monster, often hidden in plain sight; the suffering it inflicts is limitless” Llewellyn King

 ME sufferers have faced decades of disbelief, ignorance, humiliation and no real treatment, despite being incredibly sick and despite 8000 papers detailing the biomedical findings of research. 

Here is a great conclusion documenting some of these findings so far:

https://medium.com/@rochellejoslyn/me-cfs-research-roundup-brief-highlights-of-biomedical-research-to-date-9249f17f291

It is far from the often repeated ‘mystery’.

It is being purposely and systematically ignored across the world.

It is not the ‘just tired’ illness.

It is not fatigue.

It is not the high achiever’s illness or the malingerer’s (although you are often accused of causing your disease by somehow simultaneously being both.)

It is not manageable, psychosomatic or imagined.

It is the near-death, life-consuming, unpredictable, bone-crushing, unrespecting, devastating multi-system, multi-organ disease.

“ME is a disease that is “often more debilitating than most other medical problems in the world, including MS, cancer, undergoing chemotherapy or HIV (until last two weeks before death).”

Taken from The Clinical Case Definition and Guidelines for Medical Practitioners for ME. 

 And yet it remains untreated.

 2.     ME IS NOT CHRONIC FATIGUE SYNDROME

“Separation of classic ME from CFS MUST happen..We will then lose the heterogeneity confounding research and treatment” Jane Colby , www.tymestrust.org (ME Children’s Charity)

 ME is still classified as a neurological disease by the World Health Organisation and was once being treated and investigated seriously in the UK.  It is very similar in its neurological make up to Multiple Sclerosis.

ME or Myalgic Encephalomyelitis (meaning pain and inflammation of the brain and spinal cord) was relabelled as Chronic Fatigue Syndrome -a somatic illness or functional (emotional) disorder without any scientific evidence. 

And in total abandonment of solid evidence of significant physiological impairment.

The unhelpful CFS (Chronic Fatigue Syndrome) label since the 90’s has been used to further dismiss patients for their ‘fake illness’.

 As author, ME sufferer and advocate, Nasim Jafry states in her blog below, having been diagnosed in 1984 and witnessing this huge shift:

“The biopsychosocial narrative is so embedded, it will take a juggernaut to shift it [the hijacking and reframing of the illness as ‘chronic fatigue’, the ignoring of robust science, the toxic influence worldwide of the psychological framework]”

http://velo-gubbed-legs.blogspot.co.uk/2017/10/my-thoughts-on-unrest-2017.html

 CFS, at least in the UK, is now used broadly for all kinds of fatiguing illnesses originating from very differing causes. The name changed, it seems, specifically to avoid financial implications*, both in correct, more expensive physical medical treatment and in paying out benefits and insurance. This was triggered by epidemics of the disease in the 1980’s, when insurance companies, particularly in the US, faced huge payouts.

It allowed already established ME research, showing likely origins, physical abnormalities in patients, with detailed, highly specific diagnostic criteria by the likes of Dr Melvin Ramsay, to be brushed aside as unrelated.

Hence the new biopsychosocial model took hold. ‘It’s all in your head’ became the response of doctors, the media and onlookers.

*This financial saving however is still very short sighted as the economical impact of people out of work with ME in the UK alone was approximately £3.5 billion last year, due to lost productivity, taxation and benefits* which far outweighs the cost of proper research, treatment or investigations that could be implemented, as stated by the Countess of Mar last week. *source: ME Association link above

 In the UK, not everyone now diagnosed with CFS has ME, due to CFS’s broader, watered down, decreased symptom inclusion. The predominant feature of ME, Post Exertional Malaise, does not have to be evident to be diagnosed with CFS. Post Exertional Malaise (PEM) means a severe intolerance to physical or cognitive activity, which causes an increase of symptoms, resulting sometimes in weeks or months of recovery (or never recovering).

 Everyone with ME however will now be lumped under CFS, meaning more serious, sometimes degenerative symptoms of classic ME, such as  PEM, are simply ignored. And those patients with no knowledge of these inconsistencies are put in ever- harmful positions of incorrect management of the illness.

 (I personally *detest* the Chronic Fatigue label and will never use it for the pain, laughability and abuse it has encouraged and allowed both in my own life since I was 14 and in millions of other cases. Others use it to mean classic ME, including renowned scientists, film makers, other sufferers etc. and I respect them but please don’t use it on me. I was diagnosed with ME in 1993, just as the name was being changed and just as the stigma started to be further established, purposely by those in power. I fit Ramsay’s criteria succinctly and unsurprisingly, not the CFS criteria, even though I now have to fight the CFS title, as ME is not acknowledged.)

3.     INCORRECT TREATMENTS AS THE ONLY OPTIONS FOR ME

Considering we are talking about a disease that has been studied for at least a quarter of a century, and remembering it can be one of the most debilitating diseases in the world, affecting millions, it is deeply troubling and outrageously neglectful that there is such a void in terms of treatment.

In the UK, and elsewhere, the medical community stubbornly hold onto the psychosomatic model and the treatments outlined in the deeply flawed, now debunked PACE trial, namely CBT (Cognitive Behavioral Therapy, adapted specifically for CFS) and Graded Exercise, a therapy designed to increase activity in patients. These treatments are now the dominant treatment plans offered via Fatigue Clinics across the UK.

(If you don’t live near to a Fatigue Clinic, there is nothing.)

The PACE trial and its theories form the basis for the NICE guidelines which the NHS follows to administer treatment.

This means you will also not be offered further investigations, tests or referrals for concerning symptoms (more on this below). http://me-pedia.org/wiki/PACE_trial

Patients and advocates who have protested the NICE guidelines since 2007 when they were last reviewed, already knew how dangerous the treatments were, especially considering the harm caused when graded exercise is inflicted on those with PEM.

However, more recent sufferers will not be given this information and in total desperation, facing unrelentless long term illness and not even contemplating that this advice could be incorrect (and crucially, not being informed that this is a psychosomatic model),  they enter into these treatments.

Fatigue clinics, run by clinical psychologists, continue the treatment of our ‘false illness beliefs’ and thereby, however implicitly, blame and shame the patients when they don’t recover from incorrect treatment. Patients are not told of the biomedical causes of their illnesses and they are pushed into ignoring symptoms.

It is much like an example Jenn Brea gives of giving diabetics sweets as treatment and then blaming them when they get worse. 

Treatments aren’t just unhelpful; they are potentially permanently disabling, as has been the case for hundreds and hundreds of patients.

People with severe ME who can’t attend these clinics or their doctor’s surgeries are told there is no treatment. 

Severe/ Very Severe ME means permanently housebound or bedbound; severely limited, sometimes living completely in darkness, tube fed and void of all life. This free 1-hour film depicts this state of illness very powerfully. (Use code VOICES for free access)

http://voicesfromtheshadowsfilm.co.uk/http://voicesfromtheshadowsfilm.co.uk/

By the time many less severely affected people realise this treatment is actually incredibly ill-advised and making them worse, it’s often too late and they too have become severely limited and affected, often becoming housebound or bedridden indefinitely by these programmes, with a whole heap of added shame and confusion piled onto them as they wonder why they ‘failed’ at these ‘proven’ treatments. https://www.buzzfeed.com/camillamaxted/this-is-why-i-quit-exercise-therapy

Fatigue Clinics continue to give misleading outcomes of successful treatment by excluding those in their data who either couldn’t attend or failed to continue the programme. And remember, clinics are treating people with CFS- which could and does include other conditions that may benefit from increasing activity, such as depression (which often causes severe fatigue).

Still the U.K. continues to endorse these treatments, as well as harmful treatments such as the Lightning Process, which was recently hailed as a ‘huge success’ specifically for children with CFS across mainstream media. However, it’s results have never been fully published by Esther Crawley and Bristol University, its criteria for patient inclusion was wide and vague and the treatment involves:

*Being told to never say you’re ill again

*Being told you have chosen to have ME and you choose if you remain ill

*Only being allowed to report positive outcomes.

So, a highly manipulative, very scary, confusing, extremely traumatizing experience for sick children who are made to believe it’s their fault and pushed beyond their physical limits, making them more ill.

And therefore, a far cry from a scientific success.

But the media still published it, without any investigation, causing potential further harm to patients and adding further weight to the ‘it’s all in your mind’ narrative. 

Here is one woman’s story of the Lightning Process that has left her bedbound, unable to speak, sit up or swallow since 2008: 

http://www.jkrowbory.co.uk/2017/09/when-you-beckon-lightning-and-invite-it-in-for-tea/

http://www.meassociation.org.uk/2017/09/me-association-statement-lightning-process-and-smile-trial-in-young-people-with-mecfs-19-september-2017/

Interestingly, treatment comprising of Graded Exercise have now been quietly removed from US health guidelines, as they’ve recognised that they are inappropriate and harmful. 

 4.     PROVE YOURSELF WORTHY OF BEING BELIEVED

 Imagine being so terribly ill and being told you’re lying or having to prove that something is wrong. This is ME.

Due to what is briefly outlined above, getting help and support, medically, financially, even relationally can often be another huge battle facing those already battling serious ill health.

Those in establishment, namely renowned psychiatrists, who have been most keen to keep ME labelled as CFS and as a psychosomatic or emotional disorder, have long since overruled all other voices to form the very defiant ceiling of dismissal around ME, meaning access to any non-psychological treatment is slim or has to be literally begged for.

 The NICE guidelines state use of drugs, such as anti-virals don’t work (proved otherwise across the world in trials and in the minority of patients who can access them) nor is there any point testing extensively for abnormalities in the body. 

Other advisory material given to medical professionals regarding ME encourage doctors not to refer their patients even with serious developing additional symptoms, causing many cases where cancer, heart disease, thyroid problems etc. are not tested for, acknowledged or treated in time.

GPs are encouraged to accept what the patient says but not to encourage ‘illness beliefs’ i.e., don’t engage proactively with their concerns.  A+E guidelines for diseases such as ME are simply not to take the patient seriously (even in a common seizure/paralysis/breathing difficulty scenario) and to assume symptoms are somatic and to not waste resources on them.

Patients who are severely ill and housebound or bedbound are routinely ignored and denied access to medical care. Even if requests are granted, the stigma of ME runs so far and wide that even further referrals will often end in further shame and another discharge.

It must be said that there are some doctors willing to listen, to be educated by their patients and refer on but they are few and far between.

80% of housebound patients are refused home visits from their GP and 65% of patients felt they had been offered no advice on how to proceed after diagnosis. (2001 report for Action for ME)

And it must also be said that most doctors just do not understand. They are simply not trained in ME in medical school. They are not educated in physical abnormalities and established research of ME and are simply following the guidelines put in place.

 Refusal to participate in harmful treatment programmes can mean the refusal of any further offers of help or financial help via DWP. There are cases of people refusing Graded Exercise, knowing how harmful it is and being told they do not want to be well and therefore do not qualify. Indeed, very few people with ME are granted benefits without appealing because of the Psychosomatic, ‘non-illness’ label.

And at the extreme end, refusal of treatment can lead to being sectioned or removed from a family home (more on this below). http://www.sophiaandme.org.uk/sophia%20&%20m.e.%20her%20story.html

This all means many patients give up begging for medical help, due to repeated malignment, humiliation and genuine fear as to how they will be assessed. I personally am terrified of doctors from my own experiences and each interaction trying to get any help is daunting and exhausting, involves pages of print outs to plead with someone to take me seriously and still is usually highly unproductive.

 This void of information and training is leaving many suffering alone for years or decades, totally neglected and unaccounted for. 

And it also leaves open a wide window of opportunity for money-makers, quack therapies and secretive, expensive treatments as desperate people without help search for their recovery. This often leads to more financial pressure, emotionally draining experiences and further disappointment as miracle cures prove unmiraculous.

A handful of ME specialists around the world offer more hope but still have no cure.

 It is hard to place enough emphasis on the effects of not being believed or treated; of continued disbelief and trivializing of such serious illness. Many sufferers agree that the stigma and helplessness they feel from being left to cope alone  is as painful as the illness itself.

The NICE guidelines are not due to be changed until 2020. 

And who indeed will be reviewing those guidelines?  It must include patient groups, recognised researchers, doctors who have had success treating patients. Not a repeat of the current fiasco. 

 We find it hard to believe that in the U.K., where we are privileged to receive outstanding healthcare via the NHS, that this could be the case. Mistreatment is much slicker and more implicit these days, after years of enforcing the lies, but it is still inexcusably cruel and unacceptable, even when delivered by unknowing professionals.

5.     THE POWER IN THE WRONG HANDS HAS LED TO UNJUST TREATMENT AND ABUSE OF PATIENTS AND HARRASSMENT OF GENUINELY COMPASSIONATE DOCTORS AND SUCCESSFUL RESEARCHERS.

The psychiatrists who rule the ME narrative are part of the medical establishment and have so far been deemed untouchable in this debate. (Simon Wesley of Kings College London has even been chosen by Theresa May to lead an independent review of the Mental Health Act, received with much criticism by many professionals both in and outside of the ME community. ://www.thecanary.co/discovery/2017/10/18/dozens-leading-professionals-just-slammed-theresa-mays-controversial-new-mental-health-guru-letter/  )

This group of psychiatrists have also gained financially from advising the Department of Work and Pensions and insurance companies in how to treat ME sufferers (in summary, it’s not real, they can work if they choose, no benefits or insurance needed)

The DWP (who save millions with the help of this ‘fake illness’ standpoint) in return funded the psychiatrists’ £5million, highly flawed PACE trial, continuing a circle of gratuitous back scratching and neglect of sufferers. 

 They also have profound influence over the Science Media Centre, controlling the ongoing media trivialisation and the unhelpful, repeated ‘It may be real after all!’ headline, fueling the question mark over sufferers’ mental health for years and years, keeping the true devastation of ME hidden. 

 “They keep on recommending harmful treatments, based on manipulated trials, conducted by people with a conflict of interest” (Brenda Vreeswijk)

That’s why another project, the MAIMES campaign (Medical Abuse in ME sufferers) is so important. It is calling for a public enquiry to address this. 

https://youtu.be/LasPOnRx1Ek

Here is a 10-minute clip by Dr Myhill, one of a handful of doctors in U.K., who has practiced outside “the narrow confines of conventional medicine” re ME, to “diagnose properly, establish underlying mechanisms and treat patients”. She’s been investigated more times than other any doctor, had her work sabotaged and eventually went into private practice, to allow her to continue to try to be effective in this field.   

The Establishment’s main concern of Dr Myhill’s work was that “all of the patients appear to be improving and none are likely to complain about their treatment” * (internal GMC memo, 2006), which is really very illuminating! 

Her refusal to abide by the non-successful, incorrect, gaslighting, psychological treatment guidelines caused much anger. 

(* From Diagnosis and treatment of CFS and ME: it’s mitochondria, not hypochondria: Sarah Myhill) 

 Other doctors trying to help their ME patients, by following biomedical research and treating ME rightly as a physical disease, are often harassed, taken to court and/or have their licenses revoked.

Researchers have had their work shut down when they discover considerable evidence. The film ‘Forgotten Plague’ documents part of this story well.  http://www.forgottenplague.com/

 Grants applied for in the area of ME or CFS are routinely turned down and some of those who have been part of uncovering the PACE trial debacle were threatened not to report their findings by the medical establishment. 

 In order to see improvement in the treatment of ME, the current guidelines and most influential voices need to be removed from the very top, to make way for believing, scientifically based, concise responses.

Significant change will not happen any other way. 

6.     RESEARCH PROVES THE PHYSIOLOGICAL PROCESS OF ME AND NEEDS MORE FUNDING

As stated above, there are over 8000 papers detailing the causes or abnormalities in ME. Some of these papers are decades old. As Nancy Klimas, from the Institute of Neuro-Immune Medicine, quotes in Unrest, very blatant signs of acquired immune deficiency were found in patients all the way back in the 1980’s. The evidence has always been there.

Other research is relatively new and still painfully underfunded.

Problems in energy production, inflammation, increased lactic acid production, ongoing infection, brain abnormalities or signs of brain injury, decreased blood volume, central nervous system dysfunction, cerebrospinal altercations, low cardiac output have all been found and that is a much shortened list.

So far, this research is side swept or too small, due to the lack of funding. Contrary to the Establishment’s psychiatrists who claim that ‘militant, angry, uncooperative patients’ scare researchers away, it is in fact the case that the biggest funds for ME/CFS research goes predominantly towards their own biopsychosocial model of work (with Esther Crawley apparently receiving the biggest grants for therapy trials such as the Lightning Process).

A lot of biomedical research is funded by patients themselves or fundraisers as they involve themselves in attempts to find answers.

Recently, the NIH has awarded four ME research centres in the U.S $7 million to further coordinate research. This is still a tiny amount considering the scale and severity of illness, but it is heading in the right direction. Sadly, it means noteworthy scientists such as Ron Davis still receive no grants for their potentially enlightening projects, which could lead to diagnostic tools and treatments. (Ron Davis now receives funding only via The Open Medicine Foundation, see link below) p>

https://www.healthrising.org/blog/2017/09/30/three-nih-funded-mecfs-research-centers-controversy/

There’s also been a 2.1 million investment from the US into UK research, looking at immune changes and genetic profiles.

More research is desperately, desperately needed to find the cause and to treat and cure ME.

https://www.huffingtonpost.com/entry/a-disease-that-cries-out-for-research-as-many-suffer_us_59970401e4b033e0fbdec35a

 7.     THE TRAGEDY OF ME OFTEN ENDS IN DEATH AND IS SHROUDED IN SECRECY

People do die from ME, either from organ failure, being left untreated, secondary causes that go unnoticed in the lack of care or from suicide.

Suicide is often the last resort of those left abandoned, without hope, stigmatised and destitute and has little to do with mental health. Many spend their life feeling they may die at any point. http://www.shoutoutaboutme.com/ab out-me/7293/

 There are no official figures for deaths from ME, which in itself speaks of the neglect and disregard for human suffering in ME.

 Carers of deceased ME sufferers have been threatened with action if they publicise biopsy results. Probably because they show the amount of physical suffering, infection, inflammation etc. etc. that is really present in ME. And that show some people die prematurely from ME without treatment. 

http://www.ncf-net.org/forum/Autopsy.htm

 On the same note, ME sufferers are not allowed to give blood, which is strange if I only think I’m ill due to my incorrect beliefs! Surely my blood is fine?  This is likely due to there being much secrecy around outbreaks of ME, with links to possible airborne viruses or serious blood infections. You see, the truth about ME is really known at government level and has been buried for a long, long time in a huge and financially convenient cover up. 

8.     FAMILIES ARE TORN APART

Children with ME have been and still often are placed on child protection registers or removed from their homes due to the biopsychosocial model of ME. They are not believed, not heard and often damaged further, receiving little support as agencies, schools etc. are not taught how seriously ill they are. Parents are led to believe their child is lying or alternatively the parent is blamed for their perceived ill health.

There are hundreds of these cases. Jane Colby of the Tymes Trust explains the current challenges and specific mistreatment of children here: http://www.tymestrust.org/pdfs/childprotectionissues.pdf Adults have died after being forcibly removed, from their homes and sectioned into mental health institutions, where conditions and accusations exacerbate frail ME bodies.

Children have been bullied and abused, thrown into swimming pools to prove they’re faking illness, verbally insulted, hurled out of wheelchairs etc. etc. etc.

http://voicesfromtheshadowsfilm.co.uk/welcome/reflections/

9.     THE PRICE OF ADVOCACY AND THE NEED FOR SUPPORT

Most advocacy is still done by ME sufferers themselves. For example, films like Unrest are funded by ME sufferers, petitions are organized by sufferers and research is often, at least in part, funded by them,

One key example is the Freedom of Information pursuits re the PACE trial which were initially undertaken by an M.E. sufferer, Allem Matthees, now bedridden still months and months later, due to the over exertion of attempting to see truth exposed. That act of advocacy saw much opposition to releasing the flawed data and has only been brought to light because of the initial request of that one courageous man (and followed by many other advocates) , leading to the NICE guidelines now being reviewed.

 These are people desperate to live, trying to survive and be well, heard and no longer mistreated. They are not the abusive militants or the lazy miserable victims, refusing help that are so often depicted. 

They, we, need other voices and other people who understand ME. 

Who see the injustice and speak out and support their efforts.

There are people who have campaigned for years and years and years from their beds; people who have never recovered who keep fighting or who have tragically died in their 30’s and beyond, leaving behind legacies of fighting for their fellow sufferers; sufferers who used every last drop of strength to try to educate and help people and fellow sufferers understand the illness.

 Jodi Bassett (http://www.hfme.org/abouthfme.htm ) and Emily Collinridge (http://www.severeme.info/about-emily.htm) are two such incredibly ill but brave,dedicated advocates, who both died in their 30’s and left behind valuable wealths of information.

10.  IT REALLY IS TIME FOR UNREST

So many thousands of sufferers have lived through everything mentioned above.

And it is unacceptable and horrific to think of future generations suffering in the same way.

Indeed, if this was the case for another serious illness we understood better, it would have caused an outcry long, long ago. But that is historically how illnesses and diseases are treated until they’re understood.

 This lack of recognition, this very suffocating, enforced encroaching of defiant dismissal, leaves patients without access to medical help-a very scary factor when you feel like you are totally obliterated; it leaves them isolated from society; it leaves sufferers so fragile they cannot see friends or tolerate life.

It depletes already sick bodies with piled-on blame, shame, constant explanations, constant appeals for medical help and worry. And it creates an ongoing exhausting, often non-sensical battle to try to somehow live, whilst simultaneously being told they don’t want to get well or didn’t try hard enough.

 There are just Inexpressible amounts of grief, frustration, sorrow, loneliness and desperation in dealing with ME.

It will be a marvellous day when decades of advocacy taken on by ME sufferers themselves sparks a change; when it is recognised and treated so patients no longer must live through what is rightly called abuse and neglect. 

When sufferers of ME can just use their little energy to just get well rather than fight for care because others have been exposed to the truth and fight on their behalf. 

I think there is momentum right now to see this injustice smashed apart. But it still needs lots of information, educating and support. 

 Thanks for reading and supporting the cause. You can follow my ME ME ME Facebook page for more thoughts, stories and information here: https://m.facebook.com/MEMEMEwords/ And twitter: caro_gblom p>

More information and ways to support can be found here:

http://www.meaction.net/

http://www.meassociation.org.uk/

http://www.tymestrust.org/  (supporting children and their families with ME)

http://www.meresearch.org.uk/

The PACE Trial cost around £5 million of UK taxpayers' money

Sten Helmfrid ‏ @StenHelmfrid

For newcomers: Flow chart that describes how the #PACEtrial for #MECFS was designed, implemented, and sold as robust evidence for the efficacy of cognitive behavioural therapy and graded exercise therapy.

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

Those of you who know me well know that I don’t often post about my illness. However recent events have motivated me to make an exception.

When I first was diagnosed with ME/CFS, I was told that the illness was psychosomatic and that I had convinced myself that I was ill when there was nothing physically wrong with me (known as “false illness beliefs”). It should be obvious to most people (with the exception of psychiatrists perhaps) that this is pseudo-scientific nonsense.The only “cure” recommended by medical bodies worldwide was behavioural therapy and exercise.

Undergoing psychiatric therapy to ignore my symptoms seemed stupid and illogical, but I decided to try to exercise. After all, what harm could exercise do? It’s unambiguously good for you, right? Moreover, it was made clear to me by the doctors I was referred to by my employer that I had to comply with their directive to increase my activity levels in order to keep my job. Adding to the pressure, well-meaning family and friends continually advised me to “get over it”, “get out of the house” and to “get on with life”.

Consequently, I exercised for six years. For six years, I pushed through the pain, flu-like symptoms and fatigue and tried to get myself back to work full-time. All the while, I was told by these doctors that I wasn’t pushing myself hard enough. I began to relapse more and more frequently and each relapse was harder to get over. Eventually I was housebound.

Even after this huge setback to my health, these morons still told me that I had to exercise and that I had to return to work in the office within a very short timeframe. I was forced to quit my job because I couldn’t comply with their demands and I no longer had the energy to look after myself, let alone fight them.

Many years later, I decided to look into the literature that supported the idea that exercise was a safe and successful treatment for ME/CFS. I was shocked. It was garbage. Worse than junk science. Even in my severely brain-fogged state, i found a number of methodological errors just in the abstract of the largest and most influential study published in the Lancet, known as the PACE trial. Delving deeper, I came across damning critiques of PACE written by ME/CFS patients and activists. It looked like the psychiatrists in charge of the study had made grave academic errors (all of which happened to bias the results to favour their chosen hypothesis and treatments -- that is that ME/CFS is a psychological illness that can be cured by behavioural therapy and graded exercise).

Compounding the problem, the authors refused to release the data for independent scrutiny of their results. This lack of transparency goes against every scientific and ethical principle. Patients that asked questions were smeared and vilified by these psychiatrists and the media as being violent and unstable.

Luckily, the tide began to turn this year. Academics started to become aware of the flaws in PACE and pressure was placed on the Lancet and psychiatrists to release their data. They refused. However, an Australian patient managed to succeed in an FOI request for some of the PACE trial data after a two year legal battle.

Analysis of that data confirmed what patients have been saying all along. Therapy and graded exercise are not effective treatments for ME/CFS. The biopsychosocial model of illness has been debunked. We have finally been vindicated. The PACE trial is a very expensive, taxpayer-funded fraud.

Why am I sharing this article? I believe that it is important that this information gets out there and unfortunately the media won’t pay much attention to it. There is also a lot of stigma and misinformation about this disease that has been disseminated by the medical profession and it is about time that this is addressed. Most importantly, people should know not to push their friends and family with ME/CFS to “get up off the couch” and they should not exercise if they ever have the misfortune to end up with this illness themselves. Don’t make the same mistakes I made.

If you are a UK citizen, you may like to sign this petition to stop these frauds and charlatans from experimenting with their bizarre therapies on children:

http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/