This page, started in April 2019, is a “work in progress”. It consists of quotes about ME, mainly from doctors and scientists; there are many, many more and hopefully, in time, more will be added.
From the NICE press release it appears that GET is to be removed as a recommendation from the new NICE guidelines and the recommendation of prescriptive CBT that was manufactured for ME is to be replaced by an offer of supportive CBT as proposed for use in other chronic illnesses.
NICE has been forced by some organisations such as Invest in ME Research (those who have steadfastly been on the side of the patient) to accept that the existing guidelines are and have been unfit.
And, tellingly, the NICE statement implicitly recognises the failure of national research councils to fund and initiate adequate research into ME by including this observation – “The committee wasn’t able to make any recommendations for treatments because of a lack of evidence of effectiveness”.
(From the Invest in ME Research website, 10 November 2020 https://www.investinme.org/IIMER-PR-20201101.shtml)
We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH’s analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden.
(Arthur A Mirin, Mary E Dimmock, Leonard A Jason; PMID: 32568148 DOI: 10.3233/WOR-203173; https://pubmed.ncbi.nlm.nih.gov/32568148/ Published: 20 July 2020)
“Myalgic encephalomyelitis is a chronic neuro-immune disease which affects many people, but unfortunately little is known about its causes and possible cure. We want to improve the everyday lives of patients and their families who are suffering and at risk of social exclusion.” said Dolors Montserrat (EPP, ES), Chair of the Petitions Committee.
(Myalgic Encephalomyelitis: MEPs call for more funds for research into complex illness Press Releases 18-06-2020 https://www.europarl.europa.eu/news/en/press-room/20200615IPR81245/me-cfs-meps-call-for-more-funds-for-research-into-complex-illness)
This study shows that orthostatic intolerance symptoms are related to CBF [cerebral blood flow] reduction, and that the majority of ME/CFS patients (90%) show an abnormal cerebral flow reduction during orthostatic stress testing. This may have implications for the diagnosis and treatment of ME/CFS patients.
(Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: A quantitative, controlled study using Doppler echography, February 2020 https://www.sciencedirect.com/science/article/pii/S2467981X20300044)
There is evidence to suggest that the cytotoxicity of NK cells (that is, their ability to destroy other cells) is compromised in some people with ME/CFS, which would have an impact on how well these individuals can fight off infections.
(Natural born killers, ME Research UK, 04 December 2019 http://www.meresearch.org.uk/natural-born-killers/)
Relapses, exacerbations and flare-up’s of symptoms can be triggered by for example, infections, and anything that stresses the body’s immune or nervous system – such as physical trauma and surgical operations.
(Dr Charles Shepherd, MEA Website Survey: What has happened to your health as a result of ME over last 12 months? 03 December 2019 https://www.meassociation.org.uk/2019/12/mea-website-survey-what-has-happened-to-your-health-as-a-result-of-me-over-last-12-months-03-december-2019/)
Although hypersensitivity is not considered a primary factor in the diagnosis of ME/CFS, it is a common finding in people with the condition. This was borne out when the team met with people from a local ME support group, many of whom identified with the issue and said that it interfered with their daily life.
(Dr Sanjay Kumar and Dr Farzaneh Yazdani, Investigating sensory processing and cognitive function in people with ME: a pilot study, September 2019 http://www.meresearch.org.uk/our-research/sensory-processing/)
Over the past 35 years, thousands of studies from laboratories in many countries have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS, compared with healthy controls: in short, there is something wrong. Moreover, most of the abnormalities are not detected by standard laboratory tests.
(Anthony L. Komaroff, MD, JAMA. Published online July 5, 2019. doi:10.1001/jama.2019.8312 https://jamanetwork.com/journals/jama/fullarticle/2737854)
The main fields of research in ME/CFS across the world appear to be a combination of metabolism, immunology, inflammation, brain inflammation, circulatory system, and autonomic dysfunction. Each of these fields are being examined through our established Collaborative Research Centers by world-renowned experts.
(Christopher Armstrong, PhD, OMF Science Liaison, The ME/CFS Harvard Collaboration building momentum, June 24, 2019 https://www.omf.ngo/2019/06/24/me-cfs-harvard-collaboration-building-momentum/)
Clinicians who currently treat this disease declare it to be more devastating than HIV/AIDS.
(Dr Kenneth Friedman, Advances in ME/CFS: Past, Present, and Future, 18 April 2019 https://www.frontiersin.org/articles/10.3389/fped.2019.00131/full)
The results show clearly that cognitive behavioural therapy and graded exercise therapy are unsuitable treatments or management approaches for ME/CFS. The changes in severity and the worsening of symptoms are clear indications that the therapies being offered are having adverse effects on the health of individuals.
(Forward ME and Oxford Brookes University Patient Survey on CBT and GET in ME/CFS, Executive Summary from Forward ME, April 2019. http://www.forward-me.org.uk/Reports/Final%20Consolidated%20Report_2.pdf}
ME can be triggered by many things, most often an infectious disease – meningitis in Saskia’s case. It presents itself as a multi-system illness, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems. There is still no test for it, nor any cure or approved treatment.
(South China Morning Post, 30 July 2018, https://www.scmp.com/lifestyle/health-wellness/article/2157439/why-me-or-yuppie-flu-aids-was-once-misunderstood-or)
Referring to the PACE Trial, Carol Monaghan MP tweeted, “When the full details of the trial become known this will become known as one of the biggest medical scandals of the 21st century,”.
(Carol Monaghan MP, 20 February 2018 https://www.meaction.net/2018/02/20/members-of-parliament-hear-about-flaws-of-pace-trial/)
People become traumatized by a debilitating illness (ME) and then become traumatized again by the reaction to them by people who don’t understand.
(Professor Leonard Jason, DePaul University, March 2017 https://resources.depaul.edu/newsroom/news/press-releases/Pages/brain-CFS.aspx)
Case control studies comparing patients with ME/CFS to both disease comparison groups and healthy control subjects find robust evidence of an underlying biological process involving the brain and autonomic nervous system, immune system, energy metabolism and oxidative and nitrosative stress.
(Professor Anthony Komaroff, International Association for CFS/ME Conference in Fort Lauderdale, 27th – 30th October 2016, http://www.margaretwilliams.me/2016/medscape-on-iacfsme-oct-2016.pdf)
Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, micorobiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS that are potentially important for defining and treating ME/CFS.
(Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), 16 July 2015 https://prevention.nih.gov/research-priorities/research-needs-and-gaps/pathways-prevention/advancing-research-myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs#finalreport)
The evidence is now so strong that ME/CFS [Chronic Fatigue Syndrome] is a multisystem neuro-immune disease that it becomes intellectually embarrassing for anyone to continue to consider it to be a psychosomatic disorder.
(The Countess of Mar, ‘Countess of Mar’s Letter to Author’, ME Research UK, posted 18 June 2015, http://www.meresearch.org.uk/news/countess-of-mar-letter/)
ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real’.
(Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Redefining an Illness, 10 February 2015 http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx)
It is thus enshrined in English case law that ME/CFS is a physical, not psychiatric, disorder.
(ME/CFS is an organic disorder, Professor Malcolm Hooper, 27th February 2014 http://www.margaretwilliams.me/2014/me-is-an-organic-disorder_hooper_27feb2014.pdf)
Myalgic encephalomyelitis (ME) is a debilitating illness…characterised by neurocognitive dysfunction, inflammation, immune abnormalities and gastrointestinal distress. An increasing body of evidence suggests that disruptions in the gut may contribute to the induction of neuroinflammation.
(Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis are Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins. Kenny L de Meirleir; Marc Fremont, Vincent Lombardi et al. In vivo 2013:12:177-188 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776582/)
Many of the documented abnormalities involve the central and autonomic nervous systems. In my experience, most sceptics are unaware of the extensive literature citing such abnormalities and become less sceptical upon reading it.
(Professor Anthony Komaroff, Nature Reviews Neuroscience, September 2011)
Derangement of the interaction between the immune and neuroendocrine systems represents one of the major mechanisms in the development of (ME)CFS.
(Rybakina EG et al; Research Institute of Experimental Medicine, Russian Academy of Medical Sciences. Neurosci Behav Physiol 2011:41(2):198-205)
(ME)CFS is a complex illness….Instead of searching for a deficiency in any single marker, we propose that (ME)CFS is associated with a profound imbalance in the regulation of immune function forcing a departure from standard preprogrammed responses.
(Broderick G, Fuite J, Kreitz A, Vernon SD, Klimas N, Fletcher MA. A Formal Analysis of Cytokine Networks in Chronic Fatigue Syndrome Brain Behav Immun 2010; 3rd May: Epub ahead of print https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2939140/)
I hope you are not saying that [ME] patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV.
(Professor Nancy Klimas, then Professor of Medicine, Microbiology and Immunology, at the University of Miami, writing in the New York Times, 15 October 2009)
This study demonstrates that a large percentage of patients clinically diagnosed with (ME)CFS have elevated levels of the IgM isotype to cardiolipin (955), suggesting that (ME)CFS may be an autoimmune condition (and) classification of (ME)CFS as an autoimmune disorder may serve to increase the availability of treatment options for patients suffering from this disease.
(Yoshitsugi Hokama et al. J Clin Lab Anal 2009:23:210-212)
Recent preliminary results from a series of MRI scans in her unit have shown impaired proton removal from muscle during exercise in 16 patients with ME/CFS compared with matched controls, leading to the hypothesis that fatigue arises due to impaired pH run off from muscle during exercise, which is influenced either entirely or at least in part by the degree of autonomic dysfunction.
(Professor Julia Newton, New Horizons 2008: ME Research UK International Research Conference held at the University of Cambridge on 6th May 2008 http://www.meresearch.org.uk/information/publications/new-horizons-2008/)
The results of this study have shown that patients with ME/CFS have high serum CRP level indicative of chronic inflammation. The combination of increased arterial wave reflection, inflammation and oxidative stress may result in unfavourable haemodynamics and an increased risk of a future cardiovascular event in these patients.
(VA Spence et al. Clinical Science 2008:114:561-566).
The results of this study indicate that (ME)CFS patients suffer from symptom exacerbation following physical stress. As with MS, lupus and RA, post-exertional symptom exacerbation appears to be both a real and incapacitating feature of the syndrome.
(Post-exertional Symptomatology in Chronic Fatigue Syndrome. Stiles, TL; Snell, C; Stevens SR; Moran M; Van Ness JM. Medicine & Science in Sports and Exercise: 2007:39(5): S445)
There is evidence that the patients with this illness experience a level of disability that is equal to that of patients with late-stage AIDS, patients undergoing chemotherapy (and) patients with multiple sclerosis.
(Professor Nancy Klimas, University of Miami, speaking at the launch of the US CDC campaign to raise awareness of ME/CFS, 3rd November 2006, National Press Club, Washington DC)
(ME)CFS is a poorly defined medical condition which involves inflammatory and immune activation.
(M Fremont, K De Meirleir et al. JCFS 2006:13(4):17-28)
Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society.
(Professor Nancy Klimas, University of Miami, American Association for Chronic Fatigue Syndrome In-coming Presidential Address, Co-Cure, 21 March 2005; from Archives of Co-Cure, https://listserv.nodak.edu/archives/co-cure.html)
In 2004, a randomized clinical trial found that ‘In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with [ME] show markedly higher levels of disability.
(American Journal of Occupational Therapy 58 : 35–43)
There is no word in the English lexicon that describes the lack of stamina, the paucity of energy [and] the absolute malaise that accompanies this illness.
(Charles Lapp, Professor of Community and Family Medicine at Duke University, USA, Co-Cure, 3 June 2004)
ME is characterized by an inability to produce sufficient energy on demand.
(2003 Canadian Consensus Guidelines)
ME in adults is associated with measurable changes in the central nervous system and autonomic function and injury to the cardiovascular, endocrine and other organs and systems. The belief that [ME] is a psychological illness is the error of our time.
(Dr Byron Hyde, ‘The Complexities of Diagnosis’, in Leonard A. Jason, Patricia A. Fennell and Renée R. Taylor [eds.], The Handbook of Chronic Fatigue Syndrome [Hoboken, NJ: John Wiley & Sons, 2003]).
Findings indicative of a problem with circulation have been reported in patients with (ME)CFS. (Our) results provide evidence of reduced cardiac output in severe (ME)CFS. They suggest that in some patients with (ME)CFS, blood pressure is maintained at the cost of restricted flow, possibly resulting in a low circulatory state. Thus there may be periods in daily activities when demands for blood flow are not adequately met, compromising metabolic processes in at least some vascular compartments.
(Abnormal impedance cardiography predicts symptoms severity in Chronic Fatigue Syndrome. Peckerman A, Natelson BH et al. Am J Med Sci 2003:326:2:55-60)
The patients with (ME)CFS (indicated) profound physical impairment. These scores tended to be below the published norm for patients with Type II diabetes, cancer, congestive heart failure and myocardial infarction.
(Functional Status, Neuropsychological Functioning and Mood in Chronic Fatigue Syndrome. LA Tiersky, Benjamin Natelson et al. J Nerv Ment Dis 2003:191:324-331)
When the Chief Medical Officer’s Report on ME was released in January 2002, the CMO for England Professor Sir Liam Donaldson said that ME ‘should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease’.
(Quoted from ‘M.E. Treatment “Must Improve”’, 11 January 2002, BBC News website, http://news.bbc.co.uk/1/hi/health/1755070.stm)
In ME, there are chronic sequelae and the effects may be neurological, hormonal, autoimmune and myalgic, which may affect the myocardium.
(Dr John Richardson: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Other Organ Pathologies. The Haworth Press Inc, New York, 2001)
There is considerable evidence already that the immune system is in a state of chronic activation in many patients with [ME].
(Anthony Komaroff, Assistant Professor of Medicine, Harvard Medical School: American Medical Association Statement, Co-Cure, 17 July 2001)
The most important thing is not to have (patients) do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.
(Paul Cheney, Professor of Medicine, Capital University, USA: Presentation in Orlando, Florida, February 1999 at the International Congress of Bioenergetic Medicine)
(ME)CFS is a severely disabling illness. Regional brain perfusion impairment (mainly hypoperfusion) was found in 83.9% of (ME)CFS patients. This study confirmed previous reports of brain perfusion impairment in (ME)CFS, providing objective evidence of central nervous system dysfunction.
(Brain SPET in Chronic Fatigue Syndrome D.di Giuda D.Racciatti et al. Presented at the Fourth International AACFS Research & Clinical Conference on CFIDS, Mass. USA: 1998: Abstract page 112)
The most seriously affected individuals may be bed-ridden most or all of the time and can do little or nothing for themselves. Recent research has made it clear that the view that there were no specific changes demonstrable in patients with ME has become untenable.
(Dr Derek Pheby, Director, Cancer Epidemiology Research Unit, Bristol University: ‘CFS: A Challenge to the Clinical Professions’, Physiotherapy 83, no. 2 : 53–56)
In my experience, [ME] is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.
(Dr Daniel L Peterson, Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in ‘Introduction’, Journal of Chronic Fatigue Syndrome 1, no. 3–4 : 123–125)
An ME patient ‘feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades’.
(Professor Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University, Congressional Briefing, 1995)
Abnormalities of immune function, hypothalamic and pituitary function, neurotransmitter regulation and cerebral perfusion have been found in patients with [ME].
(Dr David S. Bell, Instructor in Paediatrics, Harvard Medical School, ‘Chronic Fatigue Syndrome Update: Findings Now Point to CNS Involvement’, Postgraduate Medicine 98, no. 6 : 73–81)
The worst cases have both an MS-like and an AIDS-like clinical appearance. The most difficult thing to treat is the severe pain. Most have abnormal neurological examination. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self.
(Paul Cheney, Professor of Medicine, Capital University, USA, Testimony before the FDA Scientific Advisory Committee, 18 February 1993)
The disabling weakness and exhaustion a patient with ME/CFS experiences is so profound that ‘fatigue’ is probably an insult.
(J Cuozzo: Chronic Fatigue: JAMA 1989:261:5:697)