New PACE data on chronic fatigue syndrome

The latest work by Professor Michael Sharpe on his ongoing PACE study for CFS/ME - which aims to use a combination of cognitive behavioural therapy and exercise - has recently published in the Lancet. Analysis here - nhs.uk/news/2015/10October/...

But the CFS/ME "community" are not happy with most patient advocate groups and spokespeople rubbish the study and the work of Professor Sharpe.

I certainly don't claim to be an expert but I am puzzled by the hostility shown to this field of research. CBT and exercise has proven to be effective for cases of chronic pain caused by purely physical conditions such as back pain and arthritis. So why not CFS?

Answers on a postcard please

6 Replies

oldestnewest
  • On the Thyroid UK forum we have a continuing discussion about CFS/ME. A number of contributors believe that their CFS/ME was caused by low thyroid hormone levels. Whether this implies a poor diagnosis or that some cases of CFS/ME at least improve with thyroid hormone treatment is obviously a part of the discussion! There are extremes which include considering CFS/ME to always be the consequence of undiagnosed/under- or un-treated hypothyroidism through to those who believe they are entirely separate.

    i do not believe that anyone with inadequate thyroid hormone levels can ever be well served by CBT and/or exercise - unless those thyroid hormone levels are addressed. If someone is hypothyroid then going down any route other than thyroid hormone treatment could very well make things worse especially if they result in delayed diagnosis or treatment.

  • I have had a quick look at the lancet article. It is misleading, dishonest and is problematic.

    CFS/ME is a diagnosis for a set of symptoms. A set of symptoms can be the result of a multitude of different causes.

    When we first have our health disability we have no idea how to handle it and we can have severe problems with the handling of the health disability. Several years down the line we have developed strategies to handle the disability and have passed though the bereavement issues and thus as a result less negative about the disability.

    Exercise is something the knowledge of the finer points of various considerably from person to person. So for some people it can be productive and health producing and for some it can be damaging. What is called exercise is a series of muscle movements with feedback from proprioception. In some people the muscles do not function correctly and the proprioception is not working well. Exercise in this people could damage tissue. These people need to learn to improve their muscle movement and proprioception.

    CBT and exercise. What CBT , what exercise and what type of interviews were conducted. Someone is playing attention to me so I have a feel good factor from someone playing attention.

  • true on the last point - it even has a name - the Hawthorne effect—If a subject knows that he is being observed or being investigated, his behaviour and response can change.

    From the very useful

    medicalbiostatistics.com%2F...

  • Thanks for the reply.

    Found medicalbiostatistics.com. Could not find the rest of the link. Could you repost it please.

    The Hawthorne Effect is the process where human subjects of an experiment change their behaviour, simply because they are being studied.

    I know the of the Hawthorne effect. There is another effect which is not the Hawthorne. Most young children want adults to pay attention to them because it makes them feel good. Adults have the same when a person of status pays attention to them.

    There is a feel good factor which modifies one emotions for the better because someone is paying attention to our concerns and giving them credibility.

    In the Hawthorne situation your employment could be on the line or your hoped for pay rise is on the line and there is an underlying better be more careful here. A slight increase of stress producing more appropriate behaviour for the bosses who employ you.

  • The ACTIVE thyroid hormone is T3 - and required in EVERY cell of the body for a healthy metabolism. It is rarely tested when a GP suspects a thyroid issue. This is due to costs. They only test the TSH - or Thyroid Stimulating Hormone - which is a Pituitary hormone and not a good guide of what is happening at a cellular level. Sadly thousands of people are told they are NORMAL when in fact what they mean is they are in range. Hence they are diagnosed with other conditions like depression - CFS and so on.

    Looking and listening to the patient has long gone in favour of the blood tests and their ranges. So before anyone receives a diagnosis for Fibro/CFS/ME they should have thorough testing for TSH - FT4 - FT3 and most importantly the thyroid anti-bodies - Anti-TPO and Anti-TG. Autoimmune Thyroid disease is the most common thyroid issue throughout the world - and STILL GP's are saying - we do not test, the treatment is the same - YIKES. NOT.

    You also need OPTIMAL levels of VitD and B12 - also Ferritin and Folate. All are involved in a healthy metabolism - take care of the pennies and the pounds take care of themselves :-) Again people are told normal even when bumping along the bottom of the range. This is NOT good enough.

    Once on treatment - GP's continue to display their ignorance and treat according to the TSH levels which is so wrong. I for one had a lifetime of illness and on retiring to Crete in 2004 I was diagnosed with Hashimotos in 2005 - also B12 deficiency and VitD deficiency. My life has changed beyond recognition. Here in Greece they do the whole Thyroid Profile and I can add whatever test I like. I was diagnosed with Fibromyalgia by a Rheumatologist privately in the UK in 2000. No treatment and NO testing for the above mentioned issues. Since being optimally treated for the thyroid and the deficiencies all is well with the world at 69 !

    So what am I leading onto .....the above research would not have been necessary if THOROUGH testing was done for ALL patients in the first place. And YES - too much exercise can LOWER your T3. Check out Low T3 Syndrome and get your tests done ASAP :-) So exercise is not always a solution. Heart problems - check your Thyroid correctly and check out the book - Thyroid and Heart Failure - on Amazon. Liothyronine is T3.... yet another accident waiting to happen.

    I am not a medical person - click onto my name so you can read my Edited profile :-)

  • There is an analysis of the PACE trial on the Mental Health Elf: nationalelfservice.net/othe...

    If you scroll down, "What makes a good trial and how does PACE measure up?" Is an interesting section, that explains alot about what makes a good clinical trial.

You may also like...