• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Invest in ME responds to the P2P report

Kati

Kati

Patient in training
Messages
5,497
Last edited:
Kati

Kati

Patient in training
Messages
5,497
Here are some highlights:

Lines 7-11:

“ME/CFS results in major disability for a large proportion of the people affected. Limited knowledge and research funding creates an additional burden for patients and health care providers. Unfortunately, ME/CFS is an area where the research and medical community has frustrated its constituents, by failing to assess and treat the disease and by allowing patients to be stigmatized.

IiME comment:

We strongly agree that ME/CFS leads to major disability and patients feel frustrated at no medical discipline taking responsibility for this condition despite it being classified as a neurological illness since 1969.

However, the NIH have to take a portion of the responsibility for this state of affairs as “limited knowledge and research funding” directly causes the ignorance amongst the healthcare profession and leads to failure “...to assess and treat the disease and by allowing patients to be stigmatized”.

NIH funds research and therefore carries some of this responsibility for the state of affairs.

/QUOTE]
Click to expand...

Lines 65-73:

“Often, patients with ME/CFS are labeled as lazy, deconditioned, and disability-seeking; this hampers scientific progress. Both society and the medical profession often treat patients with ME/CFS with disdain, suspicion, and disrespect. Patients are frequently treated with psychiatric and other inappropriate drugs that may cause harm. Patients usually have to make extraordinary efforts, at extreme personal costs, to find a physician who will correctly diagnose and treat ME/CFS symptoms. In addition to high medication costs, the debilitating effects of ME/CFS can result in financial instability due to the physical consequences of the illness (e.g., the loss of employment, home, and other basic necessities). All of these factors contribute to the poor quality of epidemiologic studies.”

IiME comment: All of these factors can be attributed to the lack of any serious strategy to resolve the illness – which then allows flawed research to be funded and which also leads to misinformation and poor education about this illness being perpetuated.

Listen to the patients – an old adage but one which has until now not echoed in those rooms where decisions are made about research into ME/CFS.



/QUOTE]
Click to expand...
 
Kati

Kati

Patient in training
Messages
5,497
More good comments from Invest in ME:

Lines 113-117:

“Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy [GET]) demonstrate measurable improvement, but this has not translated to improvements in quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a component of multimodal therapy. Overall, agreeing on a case definition and clarifying comorbidities could launch bench-to-bedside science.”

IiME comment:

It is at this point that we begin to wonder about the real agenda.

We strongly disagree with the statement that CBT and/or GET demonstrate measurable improvement that makes a real difference in patients’ lives. In fact a large study in Belgium that collected data of 1655 patients attending four reference centres between 2002 and 2004 demonstrated that participants’ physical capacity did not change, their employment status decreased and the percentage of patients living off sickness allowance increased at the end of such therapies [9].

Also a 2007 study by Knoop et al showed that “CBT leads to a reduction in self-reported cognitive impairment, but not to improved neuropsychological test performance. The findings of this study support the idea that the distorted perception of cognitive processes is more central to CFS than actual cognitive performance.”[10].

We are very concerned about the term multimodal therapy. What does it mean and is there any evidence for such a therapy being useful for ME/CFS?

CBT and GET should not form any more part of a treatment strategy for ME/CFS than it is for other neurological illnesses such as MS or Parkinson’s disease for example.

The lamentable (some would say farcical) PACE trial in the UK that used the Oxford criteria has conclusively demonstrated the total waste of money behind these ineffectual therapies.

The emphasis should be on researching and treating the core illness and not just concentrating on comorbidities which could often be avoided if the condition was treated by knowledgeable physicians to begin with.

We emphasise this point!


/QUOTE]
Click to expand...
 
You must log in or register to reply here.