Tuesday, 26 January 2016

36 Issues Worth Pointing Out

36 Issues Worth Pointing Out out IF A CLINICIAN REFUSES TO “BELIEVE IN ME” OR WRONGLY CONSIDERS IT TO BE A PSYCHIATRIC CONDITION

http://carersfight.blogspot.co.uk/2016/01/36-issues-worth-pointing-out-if.html?m=1

(This is by Greg Crowhurst and is taken from : “Severe ME : Notes for Carers”

1. Many world-class clinicians state that ME is either an infectious disease, or an auto-immune disease as a direct result of infectious insult and recognise ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress.(Maes et al 2014), requiring a skilled biomedical response.

2. ME was recognised as a specific disease entity by The Royal Society of Medicine in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME is currently classified under ICD code G93.3. In the USA, ME ranks second only to HIV as the cause of serious, long-term illness. (Hooper 2004)

3. Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME is fatal. (National CFIDS Foundation). Two reviews have concluded that, “Substantial improvement is uncommon and is less than 6%"(Anderson et al. 2004); and "Full recovery... is rare". (Cairns & Hotopf, 2005)

4. According to the Chief Medical Officer (DH 2002) people with Severe ME in the UK currently receive "seriously inadequate health care”.

5. There is a significant body of compelling published evidence, demonstrating the involvement of the central nervous system, the autonomic nervous system and the peripheral nervous system in the pathogenesis of ME, as well as immunological and vascular disruption. (Williams 2004)

6. There are known to be so many issues with the body’s defence against pathogens, the Immune System, in ME that it has also been called CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome. When the immune system has been seriously disrupted, all kinds of bacteria can no longer be eliminated.

7. ME is not a somatoform, “all in the mind”, psychiatric disorder. The documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME/CFS patients (Williams 2004) have led to the WHO classification of ME as a neurological illness. The UK Department of Health and the WHO Collaborating Centre at the Institute of Psychiatry have agreed that ME is undoubtedly neurological. There is no published evidence whatsoever, as opposed to opinion, that ME (as distinct from chronic fatigue) is a psychiatric disorder. (Williams 2004)

8. ME is not ‘medically unexplained.’ ME is a multi-system disease with many organ and bodily systems affected, producing a myriad of symptoms [and] many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. (ME Society of America)

9. Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) are potentially harmful to anyone with ME. The Chief Medical Officer (2002) warned that exercise-based regimes advocated for less severely affected patients tend not to have been studied among those most severely affected. Shepherd (2001) warns that as much care should be taken in prescribing exercise as in prescribing pharmaceuticals, for ME patients do not respond to exercise in a manner that is expected of healthy people. (Streeten et al 2001)

10. It is not 'fatigue' or 'tiredness' that is the one essential characteristic of ME/CFS but central nervous system (CNS) dysfunction (Bassett 2006). As leading ME expert Dr Byron Hyde MD (2003) explains: “The one essential characteristic of M.E. is acquired CNS dysfunction, [not] chronic fatigue. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable”

11. It has been shown that ME, alongside a wide range of seemingly unrelated disorders, such as Alzheimer’s, Diabetes, may have mitochondrial dysfunction in common (Pieczenik and Neustadt 2007); the research appears to be suggesting that blood flow problems are affecting the mitochondria’s ability to produce energy instead of the mitochondria themselves being messed up in ME. (Johnson 2013). It has been estimated that people with ME are about a litre short of blood.

12. Cardiovascular dysfunction in ME patients has been well documented for many years. (Williams 2008)

13. Cardiac output in normal people will vary from 7 litres per min to 5 litres per min between standing and supine. In healthy people this drop is not enough to affect function. But in ME sufferers Peckerman found that the drop may be from 5 litres lying down to 3.5 litres standing up. At this level, people with ME may be in borderline heart and organ failure.(Peckerman et al 2003)

14. Studies have shown that the baroreflex response that regulates blood pressure is under performing, particularly in Severe ME. (Peckerman et al 2003) The heart’s job is to maintain blood pressure. If the blood pressure falls, organs start to fail and are shut down in terms of priority.

15. A study showing that the mean age of ME patients dying from heart failure is significantly lower than the age of those dying from heart failure in the general US population, implies that ME is a risk factor to cardio-vascular disorder.( Maes and Twisk 2009 )

16. Maes et al (2009) found that Coenzyme Q10 deficiency in ME is related to fatigue, autonomic and neurocognitive symptoms and is a risk factor explaining the early mortality in ME due to cardiovascular disorder.

17. Neurocognitive problems, strikingly similar to those of patients presented with D-lactic acidosis (linked to Short Bowel Syndrome) reported to be made worse by physical or mental exertion, are one of the most frequent and disabling symptoms associated with ME. (Sheedy et al 2009)

18. In 2009 a study found vitamin D levels to be considerably lower in ME patients than in healthy people. Soon after an investigation at the University of Dundee discovered an association between lower vitamin D levels and arterial stiffness, dysfunction of the endothelium (the lining of blood vessels) and inflammation, in ME patients. (Breakthrough Spring 2015)

19. ME is not depression. Research, for example, shows that ME patients show more alpha electroencephalographic activity during non-REM sleep, but this is not seen in dysthymic or major depressive disorder (Whelton, Salit, & Moldofsky, 1992). There are five major clinical tests of depression, all related to disturbances of the HPA (Hypothalamic-Pituitary-Adrenal) axis; they are, increased levels of Overnight Cortisol, 24-hour urinary cortisol, Corticotropin-releasing hormone, Arginine vasopressin and Adrenocorticotropin hormone (ACTH), ACTH is a hormone that is often released in response to stress, high ACTH levels can be an indicator of depression. ME patients, generally, show none of these signs, that is because ME, contrary to what many doctors wrongly believe, is not depression. (cf. Komaroff 2015)

20. SPECT cerebral blood flow studies of persons with ME show decreased blood flow in several key areas such as frontal lobes and brain stem which are different from both healthy controls (Barnden et al, 2001Costa et al, 1995) and depressed subjects (Schwartz et al, 1994, Fischler et al, 1996). PET scan studies have reached similar conclusions. (Tirelli et al, 1998)

21. The neurocognitive impairment in ME has been found to be rooted in physical dysfunction, not maladaptive thinking, related to decreased cerebral blood flow velocity. (Ocon et al 2011)

22. Hickie (1991) found that general characteristics of depression: anhedonia (lack of pleasure in life); weight loss; suicidal ideation; severe psychomotor change; pathological guilt; and severe anxiety, are not typical in ME.

23. ME is not deconditioning. The predominant psychiatric paradigm, still seems to be that patients have medically unexplained chronic fatigue, and that their problems derive from deconditioning consequent on physical inactivity at best and simple avoidance behaviour (underpinned by abnormal illness beliefs) at worst. (Scottish Cross Party Submission 2005).

24. What happens in ME has little to do with cardiovascular deconditioning (Spence & Stewart 2004) and is more related to chronic orthostatic intolerance/postural tachycardia syndrome (POTS), caused by vascular dysfunction.

25. Studies have shown that most patients do not avoid minimal activity and that lack of fitness is not related to the fatigue in ME (Bazelmans et al 2001 ). Moreover, deconditioning cannot explain the documented delay between the end of exertion and the exacerbation of symptoms, the upregulated immune system etc. (De Merlier et al 2000)

26. Although, as with lupus, multiple sclerosis and ovarian cancer for example, there is no medical test available to confirm a diagnosis of ME, it is absurd to claim no objective or quantifiable abnormalities can be found in patients with Severe ME. (Bassett 2006) “Tests will only all be normal in M.E. patients – as with all illnesses – if completely the wrong tests are done, or if those tested do not in fact have M.E. in the first place.” (Bassett 2006)

27. A 2015 study at Stanford University, comparing brain MRI images, found that the brains of people with ME differ from healthy subjects in at least three distinct ways: white-mater content was reduced by about 7%, a consistent abnormality in the right arcuate fasciculus was identified with links to the severity of illness and there was a thickening of grey matter, where the two areas of the brain connect at the right arcuate fasciculus. These results, showing strong evidence for Central Nervous System defects, were reported widely around the world. (Breakthrough Spring 2015)

28. Certain aspects of immune system dysfunction, dysregulation of the RNase L pathway, hyperactive NF-kappaB leading to disturbed apoptotic mechanisms and oxidative stress or excessive nitric oxide, for example, appear to be present in both Cancer and in ME and may play a role in the two diseases and in the physiopathology of the common symptom fatigue. (Meeus et al 2009)

29. There is evidence that ME is characterised by increased oxidative stress (Maes et al 2011). Researchers at the University of Dundee have found that people with ME have high levels of reactive oxygen molecules which can harm blood vessels and muscles. (Breakthrough Spring 2015)

30. There is good evidence that ME patients have a generalised hyperalgesia (an increased sensitivity to pain throughout the body which increases after stressors and following exercise – this is unusual because sensitivity to pain normally decreases in people during physical activity. (Breakthrough Spring 2012)

31. Problems with eyes and vision are common feature of ME, including eye pain (which is severe or very severe in one third of cases), prominent eye movement dysfunction and visual processing issues. (ME Research 2015)

32. Studies examining the microecology of the gastrointestinal (GI) tract have identified specific microorganisms whose presence appears related to ME, which is associated with marked alterations in the gut microbiota, with lower levels of Bifidobacteria and higher levels of aerobic bacteria. A CFIDS Association of America pilot study, for example, found greatly increased ratios of Firmicute/Bacteriodetes bacteria before and after exercise in ME. (CIFDS 2013)

33. It has been found that a significant subset of ME patients may have a chronic, non-cytolytic form of enteroviral infection which could be diagnosed by stomach biopsy. (Chia 2008)

34. Reports also suggest that ME patients may have a major drop in all E.Coli species - in contrast to Crohn’s Disease where over 95% of the invasive species are E.Coli. (Lassesen 2013)

35. One of the most consistently observed abnormalites in ME is hypocortisolism (low cortisol levels); there is evidence for reduced cortisol and ACTH production/responsiveness in ME, alongside evidence of reduced adrenal gland productivity. A mutation in the cortisol binding globulin gene (CBG) has also been found in people with ME, this impaired CBG functioning would exacerbate any cortisol deficiencies already present. (Torpy et. al. 2001)

36. New Scientist magazine reported in July 2015 that nearly two thirds of people, diagnosed with “ME/CFS” who have taken Rituximab, a drug normally used to knock out white blood cells in people with lymphoma and rheumatoid arthritis, have experienced a major remission of their symptoms. We are not sure, however, if Rituximab really is a potential treatment for ME; it could be that the two thirds of patients it helped have “CFS”, not ME, for “ME/CFS” is an umbrella term, subject to many different interpretations, incorporating a wide range of meaning and poorly identified conditions. If you have ME, caused by an enterovirus, the John Richardson Group (2013) warn, it could be very dangerous indeed to take Rituximab, which suppresses the immune/virus balance.

  It should be stressed that any registered medical practitioner, consultant or GP, in the UK, who chooses to dismiss or ignore widely available biomedical evidence for ME, may be in breach of the legal requirement for doctors to keep up to date with developments in medicine and medical science and this consequently raises issues of medical indemnity.(Hooper 2010 )

  In the UK, there is no act of parliament setting out patient’s rights, however the NHS must take account of law made by parliament (e.g. Human Rights Act etc.) or by court judgements. Health professionals must use reasonable care and skill and patients are entitled to receive care of a standard which a “responsible body of medical opinion” considers to be appropriate to their condition. If the duty of care is breached, the patient may be able to sue for negligence.(NHS 2006)

 Greg Crowhurst (c) 2016
 From : Severe ME : Notes for Carers 

Saturday, 9 January 2016

The Last Great Medical Cover Up

This is worth watching, but I don't agree that all blood tests are normal in people with ME.


Friday, 8 January 2016

I Rolled My Eyes At Parents Who Said Vaccines Caused Their Kids' Autism

This isn't new, and it isn’t about ME, but it is definitely well worth reading -

I Rolled My Eyes At Parents Who Said Vaccines Caused Their Kids' Autism


This is not aimed at anyone in particular, so please don’t think it is. I am seeing this vaccine argument all over my newsfeed lately, and I have to put in my two cents.

If you’re pro-vaccine, I get where you’re coming from. Up until last year, I was right there with you. Some of my older friends might remember I used to joke about how stupid “the anti-vaccine movement” is. I used to mock them. I would roll my eyes at parents who claimed vaccines caused their kids’ autism. I figured they were understandably angry and full of grief, and looking for someone or something to blame for a mysterious disorder for which a cause cannot be found. I have two children with autism. I get it. And yet, “science” had “proven” that vaccines don’t cause autism. So I figured these paranoid nuts needed to let it go, and move along and find someone or something else to blame. After all, my own sons had only received a few vaccines as babies, before an out-of-state move and some other life circumstances disrupted our check-up schedules. I figured nah, vaccines didn’t cause their autism. They didn’t even get all that many.

For those who don’t know our story, here it is in a nutshell: I have two sons who were diagnosed with “profound and severe autism” at age two. Both of them. I was told they would possibly never talk, never be able to attend regular school with “regular” kids, and so on. It was not a case of a “quirky personality” or “maybe Aspergers” like some kids have. It was not poor parenting or lack of enough attention. It was severe, classic autism. The kind of autism parents have nightmares about their babies getting.

But after a long, hard road and a lot of work, my sons did learn to speak — not always perfectly, but they could communicate. They can, with help, attend regular school. I felt very very lucky.

Then last year, I was ordered to get William the TDaP vaccine. He would not be allowed to start sixth grade without it. For some reason I felt hesitant . . . I put off getting it. I had a weird feeling. But the school persisted and finally sent me a threatening notice. I couldn’t put it off any longer. I talked myself into it. I said, “Well, he’s made so much progress over the past few years. School did that for him! And he’s almost 12 now. What harm could come from vaccinating a 12-year-old? Even most of the anti-vaxxers claim that the problem is introducing too much “stuff” into immature immune systems. He’s almost 12. Okay. I’ll do it, so he can stay in school.” I didn’t qualify for the religious exemption, and I detest lying.

I took him to the doctor and got him the shot.

As we left the doctor’s office, he was crying uncontrollably and hitting himself. William never does this. He is normally my strong, stoic child. But I figured well, he’s autistic and he’s upset that I just let them jam a needle into him. He’ll calm down in a little while.

The fit lasted all night. And I began to notice that he couldn’t talk. All night. He would struggle to put together a basic sentence, the kind he had been saying for years, and he couldn’t get more than an isolated word out of his mouth.

I thought, “Man, he is really xxxxxx about that needle. He’ll be better in the morning.”

He wasn’t. For several weeks his behavior at school deteriorated. My normally happy child was miserable. He couldn’t communicate any longer. He had lost precious years and years of learning to speak, and could now only mutter “hungry” or “bathroom.” He was frustrated, and I can’t even imagine the amount of grief he must have felt. For years he worked so hard to learn to speak in sentences, only to have all of that progress undone in a single moment. His voice, that he worked so hard to earn, was stolen.

It took him months to regain his speech. Really, I feel like it took the entire school year before he was speaking in his old way once again. I think the worst of it was over in a couple of months, but it was a long time before I heard long, complex sentences from him again.

Yep, this is the type of “vaccines caused my son to develop autism” story I used to roll my eyes at. I can’t prove it, and I knew if I reported it to the doctor I’d be mocked as a paranoid parent. I did nothing. Because I knew I made a horrible mistake that day, and I couldn’t undo it. I can’t sue, because the vaccine companies have legal immunity. I wouldn’t sue my doctor, because he did what I asked him to do. I can’t sue the school, because I could have lied and filled out the religious exemption form. There was nothing I could do, so I did nothing but watch my son struggle and wallow in my guilt and grief. I hate myself for putting him through it.

But here’s one thing I can do. I can tell this story. Sorry, I know for most of you it’s “TLDR” (too long, didn’t read). But I’m telling it anyway.

I’ll never laugh at an anti-vaxxer ever again. I’m now one of you. I think it’s easy to dismiss the concerns of a parent when their 18-month-old, who barely talked anyway, has problems after a vaccine. But my son was nearly twelve years old. And talking in sentences. And his speech immediately stopped the afternoon he got his shot. You cannot tell me I imagined this.

Cameron won’t be getting that shot. I’m sorry that William had to be our family guinea pig. But Cameron will. not. be. getting. that. shot.

Believe me or not, I don’t care. Science has not proven to me that these vaccines are safe for everyone. You make whatever decision you want for your kids, but no one will ever again tell me what to do with mine.

~ Emily Davis Hall


Tuesday, 5 January 2016

Medically Explained Assumptions


Jean Martin Charcot was a pathfinding 19th century neurologist with a particular genius for anatomical dissection and postmortem diagnosis, but he may be best known today for his work on ‘hysteria’. In his book Freud, Richard Webster describes Charcot’s ‘classic case of neurotic hysteria’, in which a man named Le Log—–  who suffered memory loss, paralysis and seizures after being knocked to the ground by a speeding carriage, was deemed by Charcot to be suffering psychological trauma from the accident. As Webster suggests in his book, such a patient today would be recognized as having ‘a case of closed head injury complicated by late epilepsy and raised intracranial pressure’. But the concept of internal head injuries was not understood at the time, so because Le Log—– had no visible signs of injury, Charcot assumed that the symptoms must be psychological. The poor man was misdiagnosed with ‘neurotic hysteria’ and subjected to psychological therapy,  which won’t have done very much to cure his concussion.

Charcot did not invent the concept of ‘hysteria’ but his interest popularized its use and over the years it was applied to epilepsy, multiple sclerosis, Parkinsons disease, cerebral tumours, and a great many other conditions which were not at the time recognized as the physical problems they were later acknowledged to be.

The diagnosis ‘hysteria’ is not in use today but the medical profession’s habit of labeling any patient with symptoms that don’t fit the pattern of a currently recognized pathology as ‘psychologically ill’ remains as prevalent as ever. These days, they use terms like ‘somatization’, ‘conversion disorder’, and ‘medically unexplained symptoms’ but the concept remains the same. Any set of symptoms which aren’t in the medical textbooks is assumed to be ‘all in the head’.

In the 21st century there is really no excuse for this. A quick glance back through history will reveal that time after time this practice has led to misdiagnosis, as medical science has gradually identified more and more genuine physical conditions which were previously dismissed as ‘psychological’. Yesterday’s ‘hysteria’ is today’s epilepsy, today’s MS…

Ironically, while the physical conditions are required to meet precise and stringent criteria for diagnosis, the psychological labels seem to be largely defined by exclusion. ‘If you don’t meet the physical criteria,’ you are told, ‘you must have this other condition we’ve dreamed up…’ No further evidence seems to be needed. The health professional’s opinion is all powerful.

As far as I can deduce, there is no proof that conditions such as somatization actually exist, any more than hysteria did, but even if they may sometimes have some validity, the practice of allocating them to patients by default, just because medical science has not yet defined a specific template for their symptoms, is clearly mistaken.

So why does it continue?

I can only assume it is because it is convenient for the medical profession. Doctors are able to refer patients on for psychological therapy instead of having to admit that the patient’s problem is outside their knowledge, and at the same time it brings in extra work for psychiatrists and psychologists. So everybody wins – except for the misdiagnosed patients of course.

In this environment, is it really surprising that people with ME (myalgic encephalomyelitis) are so often misdiagnosed as having a psychological condition? It’s only the same thing the doctors have been doing for years: assuming that the state of medical knowledge is so advanced that anything not in the textbooks can’t be physically real and must be down to some sort of aberrant thinking on the part of the patient. When you look at it from this perspective, you could argue that the doctors aren’t really picking on people with ME after all. This is just what they do with conditions they don’t understand. They’re done it for hundreds of years. It’s nothing personal to us…

I’m sure doctors think they’re helping their patients by referring them on for psychological therapies – and in some cases they are, of course. Such therapies can be helpful, even where a physical condition exists. CBT (cognitive behavioural therapy) can be of assistance in ME, for instance, if it’s used to address obstacles to pacing such as guilt and ‘people pleasing’. But where it is used – as it predominantly is – hand in glove with GET (graded exercise therapy) to convince the patient there is nothing physically wrong with them and all they have to do to get better is to ignore their symptoms and push themselves regardless, then it can lead to a serious and long term deterioration in the condition, as evidenced by the recent ME Association patient survey.

One of the frequently repeated misapprehensions about people with ME is that we object to a psychological diagnosis because of the stigma it brings. This was most recently voiced by the former BMJ editor Richard Smith (in an otherwise helpful piece which called on the PACE Trial researchers to release their data). He wrote:

“The emotion stems from sufferers from the condition (ME) resenting greatly the idea that it may have psychological causes with the stigma that implies. The resentment seems to be that psychological problems are not seen “real” in the way that physical ones are and that they may result from “moral weakness” rather than a morally neutral virus.”

Goodness knows where Richard Smith got these weird ideas but they’re not something I’ve ever heard from people with ME. The main reason we object to a psychological diagnosis is straightforward enough: because it isn’t accurate. There is now substantial evidence that ME is (as the recent IOM Report describes it) a ‘serious chronic complex systemic disease’ with a growing body of biomedical research studies to support this view. A handy A4 sheet with details of ten such important findings was recently produced by Prof Anthony Komaroff, and the IOM Pathways to Prevention Report makes clear: ‘this is not a primary psychological disease in etiology’.

Furthermore, the psychological misinterpretation of the condition leads to inappropriate therapies which, as mentioned above, can have seriously damaging consequences for patients; it diverts interest and investment away from the biomedical research which is desperately needed; and it provides ammunition for misinformed media coverage like the Telegraph article we saw a few weeks ago, which can seriously damage relationships between people with ME and their friends & family and society in general.

These are the reasons why we want our condition to be recognized for what it is. It has nothing to do with the potential stigma of psychiatric illness. We have no reason to fear such stigma, as the truth is that we already have more than enough of our own. Sir Simon Wessely quite rightly speaks out against the stigma of mental illness, pointing out that such conditions are as ‘real’ and unpleasant as physical ones, but the truth is that this stigmatization seems to be just as prevalent among the medical profession as it is in society at large, and the medics who buy into it seem to reserve special disdain for those they perceive to be mentally ill yet who refuse to accept their diagnosis. It is true that if you’re mentally ill, you tend to be at a disadvantage in dealing with doctors. But if you don’t accept this label and – worse still – don’t respond well to the treatments they give you, then you’re really in trouble.

Welcome to life with ME.

Never mind that there is substantial evidence of biophysical abnormalities and none of an underlying psychological cause, the psychosocial model of ME so beloved of mainstream medicine, especially here in the UK, requires us to forget all that and believe we’re not physically ill – or else risk being seen as a difficult patient. We are asked to believe that the day to day reality of our illness is other than what it is.

In her excellent recent blog post, ‘The Politics of Stigma with ME/CFS’, Catherine Hale quotes the Buddhist author and ME patient Toni Bernhard on this subject: “we have been branded not credible witnesses to our own condition”. Catherine goes on to suggest that ME has been represented as ‘an illness of misperception of reality’.

Yet whose misperception of reality is really the problem here?

We patients with ME are sometimes described as having ‘medically unexplained symptoms’, yet what exactly is ‘unexplained’?

We don’t yet understand the exact mechanism by which our symptoms are produced but if, as the evidence suggests, we have a neuro-immune multi-systemic condition, that is surely explanation enough for why we are suffering.

What is less easy to explain are the many misperceptions of the medical profession:

  • why any set of symptoms not in the medical textbooks is automatically assumed to be ‘psychological’, even though history shows this has consistently proved to be a mistake
  • why people with ME are assumed not to be physically ill when there is plenty of credible evidence to show that we are
  • why we are treated with therapies such as CBT and GET for which there is little evidence of efficacy and which patient experience suggests can be very damaging
  • why PACE, the largest study in support of these therapies, is assumed to be ‘excellent research’ in spite of innumerable fatal flaws

It seems to me we are the victims not of ‘medically unexplained symptoms’ but of ‘medically unexplained assumptions’.

It is not us, people with ME, who are making these assumptions. But day after day, year after year, we have had to suffer their consequences.

Now, as a new year dawns, perhaps the medical profession will finally start to open its eyes to reality.

2015 brought many encouraging developments:

  • The US IOM and P2P Reports have reported on the true nature of our condition
  • New research funding has been announced by the US National Institutes of Health
  • Prominent researchers such as Ian Lipkin and Ron Davis have spoken of a new urgency to ‘solve the puzzle’ of ME
  • Even here in the UK, thanks to David Tuller, James Coyne and the work of the many patients and professionals who have chipped away to expose the flaws of the study over many years, pressure is growing on the PACE trial researchers to surrender their data.

Let’s hope that 2016 brings us closer to the day when the mists finally part to reveal the truth, and the mistaken assumptions of decades (and centuries) past are consigned to history.

While the clocks tick by on our lives, we wait to see…


Friday, 1 January 2016

Happy New Year and My Blog Top 10 2015

A Very Happy New Year to readers of my blog, your families and friends.

C H Spurgeon’s morning devotional for 1st January –


"They did eat of the fruit of the land of Canaan that year."

Joshua 5:12

Israel's weary wanderings were all over, and the promised rest was attained. No more moving tents, fiery serpents, fierce Amalekites, and howling wildernesses: they came to the land which flowed with milk and honey, and they ate the old corn of the land. Perhaps this year, beloved Christian reader, this may be thy case or mine. Joyful is the prospect, and if faith be in active exercise, it will yield unalloyed delight. To be with Jesus in the rest which remaineth for the people of God, is a cheering hope indeed, and to expect this glory so soon is a double bliss. Unbelief shudders at the Jordan which still rolls between us and the goodly land, but let us rest assured that we have already experienced more ills than death at its worst can cause us. Let us banish every fearful thought, and rejoice with exceeding great joy, in the prospect that this year we shall begin to be "forever with the Lord."

A part of the host will this year tarry on earth, to do service for their Lord. If this should fall to our lot, there is no reason why the New Year's text should not still be true. "We who have believed do enter into rest." The Holy Spirit is the earnest of our inheritance; he gives us "glory begun below." In heaven they are secure, and so are we preserved in Christ Jesus; there they triumph over their enemies, and we have victories too. Celestial spirits enjoy communion with their Lord, and this is not denied to us; they rest in his love, and we have perfect peace in him: they hymn his praise, and it is our privilege to bless him too. We will this year gather celestial fruits on earthly ground, where faith and hope have made the desert like the garden of the Lord. Man did eat angels' food of old, and why not now? O for grace to feed on Jesus, and so to eat of the fruit of the land of Canaan this year!



My Blog Top 10 2015

The Top 10 most popular items of all the things I posted on my blog during 2015 were as follows –

  1.  Dr. Andrew Wakefield Speaks Out on CDC Vaccine Science


  1. Through Gates of Splendour - Elisabeth Elliot (1926-2015)


  1. What Various Hindrances We Meet – Rev John Thackway


  1. An M.E. Spring ??? – Greg Crowhurst

               
  1. Rational understanding of the symptoms of ME/CFS – Dr William Wier


  1. Countess of Mar tells House of Lords that people with ME/CFS are treated “abominably” by caring professions


  1. Treating Thyroid patients like children – Dr Malcolm Kendrick


  1. PACE Trial Key Dates and Chronology of Complaint – Prof Malcolm Hooper


  1. Further responses to the article in The Telegraph about the PACE Trial


  1. October Holiday – Tim and Lois’s travels, including Italy and Israel